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I listened to an interview with best-selling author Marion Keyes today and she talked about writing emotional landscapes. This is a wonderful phrase; it captures the many random thoughts I have about life, being human, living with cancer, with chemo, with uncertainty. Random thoughts, the theme for this blog, a collection of moments from the last two months where thoughts appeared in my mind as I sat, walked, waited, tossed, turned, fumed, cried, ached, appreciated, smiled, laughed and loved, always loved.
House music is on my mind and in my ears…though the Brighton weekend for clubbing was a bust – great weekend – we just didn’t find a stylish club with fab house music. Our guys went ahead to do reconnaissance. They didn’t even make it inside one club. A group of people came out (not fast enough according to them) saying very loudly how sh*t the club was, dark, dingy, crap music…needless to say we abandoned that idea. Fab friends made up for clubbing disappointments. After all, we are fortunate enough to live in one of the best club cities in the world so maybe we’ll stay local next time!
The chemo regime called VTD is different this time, cannulation monthly only – yippee! The weekly injection of Velcade isn’t so bad. I take one dose of anti-nausea beforehand and haven’t needed anymore anti-nausea drugs afterwards so far. I end up with a little localised bruising. The drug kicks in fully after about 36 hours…funny sensations, aches, pains (all bearable) in my bones…I visualise Myeloma shrivelling and dissolving.
The Thalidomide seems to impact my quality of life a lot more than the Velcade. Yes that Thalidomide, the one that causes horrible side effects for foetuses. It is no longer given to pregnant women but was discovered to have a positive impact on cancer, see here), The daily 80mg dose knocks me out and I feel tired ALL THE TIME. The stuff is toxic. A nurse who first administered the pills to me was gloved up and handling it like it was a hot potato, doing their best to avoid all contact with the pills. I wondered what the hell I was about to put into my body!
Even the weekly steroid doesn’t combat the lethargy (but it has made me eat more and I’ve put on 7kg that I don’t want!). Early morning energy is now a distant memory. The other unwanted side effect of is my stomach is like a horizontal crackerjack. I take Thalidomide and out my stomach comes, tight and large, making me look like I have consumed a whole loaf of gluten filled bread or more ironically, I look pregnant. On top of the VTD chemo regime I inject nightly Clexane, a blood thinner to stop the Thalidomide from causing blood clots.
Oh the layers…take this because it helps this but then take that because to take the first thing you need that thing to stop the bad things of the first thing….and round and round it goes….Still, the regime is working and the presence of Myeloma in my blood and bone is dropping again, down from 17 to 11. Hopefully it will continue to fall.
Doesn’t it seem an age since Christmas already? I nicked named last Christmas, Creepy Chrimbo because the hospital was strange and very different from usual. My chemo didn’t stop just because it was Christmas eve or New Year’s eve. I am grateful for all of the hardworking nurses who managed to fit in everyone’s treatment to a short week so Christmas Day could be the best it could be.
Hospital halls were eerily empty and I could hear every footstep I made ringing in my ears. I felt like I was in an Alfred Hitchcock thriller or that Jack Nicholson’s horror film grin would appear around a door jamb any second. The sense of being alone was made worse because the Chemo Unit is down the end of a long corridor, I often feel like it’s ‘shoved away’ with the renal unit, out of the way because somehow we are toxic and ‘they’ don’t want us near others, the healthier people, in case we contaminate them somehow. I know this is silly but then maybe not? Chemo is after all, hazardous, noxious and needs careful handling so maybe it is purposeful that our unit is past the research centre and beyond the other wards. I know it isn’t helpful to think this way, a little negatively, like we are not really wanted and are merely being put up with somehow. The NHS staff certainly don’t perpetuate this story; they are friendly and welcoming.
Just before I was alone in the long corridor I noticed a woman on a hospital bed being wheeled towards the renal unit. I try not to look at people when they are being wheeled around in public view, I often think it is fairly undignified yet obviously a necessary event in hospitals. I wouldn’t want to make eye contact with anyone if it was me on that bed. I’ve noticed some patients close their eyes, put a pillow or blanket over their face – possibly to gain some privacy in a very public space so I try to offer it by glancing away quickly. Though if someone in a bed looked directly at me I have decided to smile and hope they find it reaffirming, reassuring, and non-judgemental somehow.
This woman was on her side, looking away. It was after 5pm on the 24th and I wondered what her Christmas would be like and what her story was. Would she be sad to be in hospital over Christmas Day? Did she have family who wished she was with them? Would they visit her? Did she want them to visit? Or was she secretly relieved she had the best excuse to not ‘do’ Christmas this year, to rest and focus on herself instead. Or maybe she didn’t celebrate Christmas at all and instead would be disappointed to be missing out on holidays. These thoughts vanished as I found myself alone in a grey corridor with white walls, in silence where there was usually the hustle and bustle of nurses, doctors, patients and public, trolleys and endless supply boxes.
The silence strangely continued outside where the usually busy main street was devoid of cars and people. This reminded me of the contrasts of Christmas, wonderful, fun, exciting for some and challenging, triggering, or lonely for others.
The new buzzword popping up everywhere is Repurposed. From transforming old furniture into something new or turning one person’s rubbish into another person’s useful item, and now, the latest thing is repurposed drugs. Essentially, using drugs already approved by the medication regulators for treating non-cancer illnesses, to treat cancer or be added to existing cancer treatments to increase effectiveness.
When I first came across this I thought it was yet another cancer fad because the headlines gaining traction were about repurposing dog wormer! Yes you read correctly. Cancer patients were shouting out about how an anti-parasitic drug called Fenbendazole usually used for deworming dogs had cured their cancer! I was very dismissive. I don’t want to miss out on something that works but I don’t want to get caught up, distracted, invest time and precious energy into the cancer equivalent of the latest diet or beauty treatment. Dog dewormer seemed to be more in the fad than the credible category and on par with ‘take turmeric’ and your cancer will vanish. While I am a big fan of turmeric and curcumin and take it daily, I do not believe for one second that it (or Fenbendazole for that matter) will single-handedly cure my cancer or cure anyone’s cancer.
But then I got thinking, had I been too quick to write off this idea? Medical discoveries come in many forms, (like the Thalidomide scandal) from unlikely places so why wouldn’t it make sense that a medication that addressed one illness, whether in animals or humans, might also be found to have anticancer effects? I took another look and found this. Click Here
I googled some more (as you do) and came across some other interesting stuff…
Trials and projects involving existing non-cancer drugs are now being investigated for their effects on cancer – these are so important because if found to be effective they are likely to be approved for cancer treatment quickly, be cheaper and more widely accessible as they are already approved for human use and side effects are known. These links explain more..
Imagine living with cancer, walking in to a clinic, having your DNA and genome sequenced by a friendly lab technician and walking out knowing a specialist will create a cancer killing virus tailored just for you and your cancer. This is another exciting development that doesn’t seem too far away now…it’s not science fiction! Check out Andrew Hessel, founder of Humane Genomics, he explains how tailor-made viruses may one day cure cancer.
I wonder how I will be repurposed…will I be fertiliser for a beautiful oak? Will I return as a stretchy, wiley happy cat? A roll of loo paper (someone’s revenge though at least it’s useful)? Or a spider, imagine eight eyes to people watch with….
I’m due an upgrade on my phone. Chatting with my wonderful friend and hairdresser K, we laughed about our mobile phone providers and how I could easily be expected to sign up to a new contract that would out last me! Humour and especially dark humour is an emotional landscape I find really helpful.
It is a high blue sky, crisp cold and sunny day in London today. This emotional landscape is beautiful and I found myself smiling, A LOT.
Woman in the woods – Andrew Neel on Unsplash
DJ – Jernej Graj on Unsplash
Dog Wormer picture (care of The Sun)
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: Bone Cancer, Cancer, Christmas, Dexamethazone, Dog Wormer, Drugs, Fenbendazole, House Music, Myeloma, Repurposed, Steroid, Thalidomide, Velcade
When I left you last, Mum was in recovery from breast cancer and Dad’s melanoma was kicking him in the groin (literally). They are amazing people, and fortunately for me they coped and are coping incredibly well with the challenges. Apparently this wasn’t enough to contend with, a trifecta was called for though I thought we had already achieved that. Not to be upstaged, my cancer leapt out of hibernation. My dreaded paraprotein levels (42 at their worst, down to 1 after treatment) are now at 17.
It was gutting to see the Myeloma active again after such a short time. I was again hit by how I wasn’t ‘special’. I wasn’t going to be the person who is miraculously cured by the new cutting edge treatment. I wasn’t going to be one of the statistics up the right (and right) end of the bell curve. I was firmly in the middle of the pack. My body had responded very well to treatment but I was one of the many people who experience the peripheral neuropathy side effect and have their myeloma become active again within 6 months after first treatment. I was well and truly on the path to being the ‘typical’ (albeit younger than usual) Myeloma patient with an 8-10 year life expectancy after diagnosis. I’m almost three years in now…well, you can do the maths.
The big upside of being on care as usual and watch and wait, is that over the last six to nine months I haven’t had to go to hospital every week, its mostly been monthly. Except that while my schedule was clearer, I had time to pack in everything that had been on hold while cancer took pride of place. More tests, x-rays, MRIs; I felt like an old hand, navigating the hospital walkways, waiting rooms and procedures with robotic familiarity. The increasingly unbearable pain in my hands, arms and ankles was not Rheumatoid Arthritis after all but more likely the bloody Myeloma.
A rotator cuff injury in my left shoulder (to go with the benign lesion that was already there, maybe it was lonely?) needs physiotherapy. It’s about nine months since the referral, no sign of an appointment yet. I have had a letter asking, do I still want an appointment?. Yes I bloody well do thanks! Well in that case, don’t contact us we’ll contact you, was the reply. Note to Health Secretary (It’s not Jeremy Hunt these days is it, hope not, though sadly I don’t know who it is and if they are any better, could they be worse? That thought is scary!!). Anyway back to the note – Dear Health Secretary, please get the physio department more resources, they are swamped! Hmmm.. not much time off hospital after all.
My next round of treatment was due to start when my paraproteins were up to about 30 (or if they started increasing rapidly). Mine had been rising steadily in 1-2 points a month. A January 2020 start back at hospital seemed a reasonable prediction and hubby and I had talked of getting away for a, never before done together three month trip, prior to the treatment shackles going back on. When Dr B said we need to start treatment ASAP, I’m worried about your back. I said no you don’t, we’re out of here. I’ve been dying to go to the middle east so as I’m dying, I’m going!
What I really said was, boo I had hoped it would be January not October, can I put chemo off for a while? He asked if I felt well enough to travel. Of course I said yes. I really do wonder what I would have said if I hadn’t felt well enough. I suspect I would have lied, said yes anyway.
I was going to test the concept of ‘patient choice’, there is such a thing isn’t there? Nothing was going to stop me getting away with hubby. We both needed a break and this rare chance where we had time off work/hospital at the same time was not going to be missed. I asked what I could do to prepare for the next round of chemo. Dr B said the best thing was to stay positive.
Ha, all the more reason for me to travel before starting treatment then. Being my ‘adventurer self’, experiencing new places, cultures, food, wine with the love of my life, IS what nourishes my soul and makes me feel positive! We negotiated with Dr B for chemotherapy to start in six weeks; not the three months I’d hoped for but brilliant all the same. A strange mix of worry (about treatment) and euphoria surged through my body. I noticed a feeling and realised it was excitement! I hadn’t felt that in ages. Walking home from clinic, visions of Israel, Lebanon and Jordan flooded my mind. I went straight in and booked flights.
I’m back now from an amazing trip. I feel ready. Really ready for the next phase of this Myeloma madness. I even feel hopeful (albeit on top of my usual layer of pragmatism) that I could still be a wee bit special. I could still get that fantastic recovery that may not be likely but is POSSIBLE.
Month one of the new treatment regime. Hit me with it Doc. I can take it. I’ve just knocked three more countries off my bucket list (big grin).
Images: Various places in Israel – Hubby or Me
© 2019 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Cancer in my family, Myeloma Treatment, peripheral neuropathy, Psychology for Cancer Tagged with: Blood Cancer, Bone Cancer, Cancer, Dying, Family, Myeloma, Para Protein, Patient choice, Positivity, Psychology, Travel, Treatment
Peripheral neuropathy. A fancy pants way of saying pins and needles. Except it is a bit more than that and the more, is scary. When tingling on the soles of my feet and in my hands turned to prickles and cried out for attention, I had just started my 14th cycle of chemo. At night, as if hedgehogs at a rave, the prickles began dancing around, keeping me awake. My self congratulation for having coped well so far and immense gratitude to my body now seemed a little premature or at least to have jinxed me. A strange oscillation between numbness and pain set in. At first, it came and went so I wasn’t too worried. I kept up the once a week, Maintenance Chemo.
The pain got worse. The tingling turned to a sharp micro needle feeling and the ache crawled up my left arm. I remember thinking, this isn’t good. I started talking to hubby about wondering whether the benefits of chemo still outweighed the side effects. We decided they did. I kept going.
So, did the sensation and the pain. The cannula insertion became excruciating. The drip of the drug into my forearm was ok but by the end of the treatment the whole arm throbbed; I hadn’t had that before. In the days in between chemo, the pain, numbness and needling rollercoaster, deepened and didn’t let up. I felt increasingly fatigued, distracted and unable to concentrate. Pain will do that. The symptoms eased a little if I did nothing and stopped using my hands altogether. Have you tried that? It is nigh on impossible! My weekends became slow, sedentary, dull; low mood came a calling.
Then it hit me; the way I hold a pen had changed. The length of time I could hold a hairdryer and the way I used a hair brush had changed. Whenever a cap needed to come off a bottle, I now ask for help. I was using two hands to open doors or press flush buttons on toilets. Cooking had virtually stopped (and I had thought I was being lazy) instead lifting chopping boards, holding pans, taking roasting dishes out of the oven were difficult. I no longer enjoyed being in the kitchen. No wonder I’d started avoiding it. Hubby rattled off a list of other things I’d stopped doing or was doing differently.
I felt exhausted just thinking about it. Should I stop treatment? Should I keep going? Would I lose the use of my hands if I continued with chemo? What would life be like if I couldn’t use my hands? If the pain was too much? Was I being a wimp? I’m on a clinical trial, I signed the forms, I committed to it; could I simply stop? What would happen to me if I did stop? Would my cancer flare? Was chemo worth it? Was chemo making things worse? How do I decide whether to continue something that may extend my life, when it seems to be significantly reducing, the quality of the life, I have left? My brain; the whizzing and often unhelpful thought production machine, joined the rave.
I told my oncologists what we had noticed about the difficulty using my hands and how I was questioning whether to stay on the trial; questioning whether more chemo was the best thing for me. They ran a few tests and determined I had lost strength in my hands, especially my left hand. They recommended I defer chemo for a week.
That week came and went with no improvement. I went into a holding pattern for another week. Peripheral neuropathy is the pits and as well as dancing needles it feels like being burnt, a searing. The pain was constant, in my shoulder, my forearm and using my hands made everything worse. More MRIs were ordered. I started to worry about new lesions. Was it peripheral neuropathy? Would it get worse? Was it something else?
It came down to one week and the limit of missed weeks allowed when on the trial. I had happily missed a few weeks of treatment to be with Mum during part of her radiotherapy and then missed additional weeks while we waited to see if the pain and hand function would improve. We now had to decide, the medical team, hubby and I, the best next step for the one remaining week; chemo or no chemo. Sounds like deal or no deal except there was no money involved, no windfall or good luck, instead hope or no hope. Bones versus hands.
Hands won. Living rather than life, won. This time. Drs L and A recommended I stop chemo; they didn’t want my hands to get worse and so I was kicked off the trial.
After 21 months, 17 cycles of chemo, virtually weekly blood withdrawal, 100 odd cannula insertions…it was time to give the body a break.
I went off the trial and on to ‘care as usual’. What I didn’t factor in, was that meant I would no longer be looked after by the trial team, the team that had had my back from the beginning, the team I had come to know, feel safe with, could express my fears and questions to and laugh with. I would be losing the team that had been with me since March 2017 when I first stepped into the Chemo Day Unit and steeled myself for the uncertainty of cancer treatment. Sigh.
Then of course there were the dominos. The other life challenges, falling thick and fast. Not sure what I mean? See my last post, Silent Dominos.
So while still dealing with Mum’s recovery and ‘what next’ (she’s amazing by the way) and my peripheral neuropathy and hand malfunction… along came the next three dominos:
Who on earth had it in for my family? Who had we unintentionally, unwittingly, annoyed?
All of us with cancer. At the same time.
We didn’t deserve this. No one does. I needed to remind myself:
Cancer doesn’t care who you are or what you have or haven’t done. It’s simply not that choosy.
Posted in Cancer in my family, Chemotherapy for Myeloma, Myeloma Treatment, Pain, peripheral neuropathy, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, feet, hands, Myeloma, peripheral neuropathy, pins and needles, Side effects, Treatment
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?
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.
Saying goodbye to anyone you love is tough. Saying goodbye to my parents is very very tough. It hits me differently every time.I’m not a call every day girl or live close by girl and never have been; maybe this is the downside of our family’s emphasis on resilience and independence? Anyway, it just worked out like that.
My parents aren’t call every day people either. I never know what I’d say, for one thing. I always knew I’d travel, then I landed overseas and didn’t come back, except for visits.
Childhood in one country, adulthood in another.
Saying goodbye is never easy. It’s even harder when life’s curve balls keep coming.
Cancer is part of our family and my parents are super brave. Now, we are all, the diagnosed, the treated or being treated and the monitored. We are all now carers of people living with cancer. For my liking, we are far too familiar with hospitals and their machinations. Being with Mum and Dad during a small part of Mum’s big C journey, seeing her handle it with courage and honesty has been a mix of scary, reassuring, and inspiring.
Strange, how living with cancer is both normal because it’s so common yet abnormal because it demands a new normal to be created…and ultimately accepted. A new normal for carers as well as patients. Treatment disrupts lifestyles either temporarily or forever more. Scans and check ups creep into lives like tax bills; always there in the diary, we know they are coming and we don’t really want to think about them or the possibility of having to pay more. Isn’t getting cancer in the first place, enough?
Worries, thoughts, about relapse or recurrence, hover around. They are set aside for short bursts of positivity and focus on the important things, before appearing like a politician, front and centre, even if there is nothing new to say.
Saying goodbye is never easy.
Though I wouldn’t mind, if it was GOODBYE CANCER.
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…
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 Tsing, Kathy Burke, Angela 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 (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 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
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.4
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
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
Here are two sheets summarising clinical support for red clover Isoflavones relating to a range of health domains.
They also explain the difference between Promensil and other red clover products including soy isofalvones. Check it out here.
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.
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:
Some women have found benefits from natural remedies BUT the research is mixed and caution is advised. Check out these summaries; 1,8,9
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…
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.
According to a recent review, Omega-3 supplements may alleviate night sweats but not hot flushes.12
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 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
I couldn’t find any relevant studies regarding Vitamin A and menopause and menopause symptoms. Please let me know if you can!
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
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
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
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 may be beneficial in comparison to not taking anything though the evidence is weak at the moment.25
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
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
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
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
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.
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.
I’m going to start natural plant based bioidentical HRT gel and progesterone tablets.
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…
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.
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!
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.
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.
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.
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.
Please do share the link to this blog, ask any questions you may have and do let me know:
Menopause, The Musical
Communities: The Menopause Cafe
2 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
1 Complimentary alternative therapies
8 Natural remedies for hot flashes – black cohosh, ginseng and more
9 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: JCPSP, 28(6), 460-465.
Soy germ and isoflavones
3 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.
Support for Promensil
5 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. Phytomedicine, 24, 141-147.
6 Panay, N. (2011). Taking an integrated approach: managing women with phytoestrogens. Climacteric, 14(sup2), 2-7.
Controversy & Genistein
4 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.
Vitamins, Black Cohosh and more
Vitamins in combination with Isoflavones –
7 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 review, 17(1), 32.
10 Muhleisen, A. L., & Herbst-Kralovetz, M. M. (2016). Menopause and the vaginal microbiome. Maturitas, 91, 42-50.
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 physiology, 229(11), 1822-1830.
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.
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 health, 4(3), 140.
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.
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. Maturitas, 81(3), 377-383.
16 Lerchbaum, E. (2014). Vitamin D and menopause—A narrative review. Maturitas, 79(1), 3-7.
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 Research, 44(5), 1103-1114.
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 journal, 12, 1.
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 nutrition, 57(3), 223-227.
21 N.B. Old study – Borrelli, F., & Ernst, E. (2010). Alternative and complementary therapies for the menopause. Maturitas, 66(4), 333-343.
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.
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.
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.
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.
Cognitive Behavioural Therapy (CBT)
28 British Menopause Society – CBT for Menopause Fact Sheet
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 & Gynecology, 38(3), 210-225.
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. Maturitas, 112, 12-17.
26 Move Over Menopause – 5 reasons why this is the best time to exercise.
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
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 Science, 9(3), 194-200.
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 Research, 6(3), R170.
Some of the interviews
Katie Phillips (facilitator of week of My Menopause – interviews with menopause experts)
Celebrity Meno Stories
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?. Climacteric, 19(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.
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
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: Alternatives to HRT, Black Cohosh, Calcium, Cancer, Chinese Medicine, Complimentary therapies, Ginseng, HRT, Isoflavones, Menopause, Myeloma, phytoestrogen, Promensil, Psychology, Red Clover, Soy, SSRI, Treatment, Vitamin B, Vitamin D, Vitamin E, Vitamins, Zinc
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.
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.
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).
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).
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
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.
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.
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).
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).
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…
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.
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.
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:
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
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!
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.
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.
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.
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
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?
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.
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.
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.
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
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.
Please do pass the link to this blog on, like the PsychingOutCancer facebook page, ask any questions you have and do let me know….
Symptoms, updates on HRT safety, antidepressants
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.
Katie Phillips (facilitator of week of My Menopause – interviews with menopause experts)
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
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
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
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
Second Cancers After Multiple Myeloma
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)
Hormone replacement therapy decreases the risk of tinnitus
Cat_dog – Paul J Everett_standdown (Flickr and Creative commons_public use)
Horse (Prince) – me
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: bioidentical, Breast Cancer, Cancer, estrogen, Hormone Replacement Therapy, hormones, HRT, Menopause, Myeloma, oestrogen, phytoestrogen, Tinnitus
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!
In the week when I decided to research Menopause and Cancer the universe must have been aligning; three different sources of Menopause information happened into my path. The first one; I turned on the radio and heard the presenter say a piece on Menopause was coming up. Perfect timing.
Menopause; a completely natural process involving women’s bodies producing less oestrogen and changing progesterone hormone levels. I’ll come back to the implications of these in part two of this blog. For now, let me tell you about something I heard on the radio that shocked me. The host talked of how she had discovered some high flying, dynamic women at the top of their career had left their jobs due to the difficulty they had experienced in managing the symptoms of menopause.
Shocked doesn’t really explain it. In this day and age? I didn’t doubt that the symptoms must have been horrendous; I was stunned that women were not being adequately supported by medicine or natural means to enable a normal physiological transition to be facilitated so that their lives and work were not impacted in such a significant way. The feminist in me wondered if men would have put up with this state of affairs though to be reasonable, menopause appears to be a learning curve for many of us. Consequently, I was shocked.
I was even more shocked when men joined the discussion and explained their relationships had broken down, divorce had resulted and they described their many regrets about not having understood what the women in their lives were going through during menopause.
Job loss, love loss. OMG. Menopause, you can be incredibly cruel and we need to talk about you, a whole lot more. Now!
Symptoms and Years
In my humble opinion, Menopause symptoms are sh*t: mood swings, hot flushes, night sweats, brain fog, short term memory loss, difficulty in finding words and string sentences together, fatigue, low libido and vaginal dryness. They often start when women are in their 40s and 50s though can start when women are much younger.
Symptoms often last YEARS. Men, please note this. YEARS not weeks or months. Most women (8 out 101) face life impacting menopause symptoms for between 3 and 7 years and for some women, the rest of their lives. On top of this, perimenopause (the few years before menopause starts) usually brings unhelpful, generally unwanted symptoms too including disrupted sleep, headaches and heavy periods.
Ok, not all women experience these symptoms so we must be careful of making assumptions however MOST women do find themselves having to go through yet another massive learning curve about their body. And guys, it would be great if you came along for the educational ride. Not least because men go through a ‘pause’ of sorts too!
For men, it’s called andropause and refers to age-related changes in male hormone levels. Male menopause (not necessarily a helpful term) involves a drop in testosterone production in men who are age 50 or older. It’s often affiliated with hypogonadism. Both conditions involve lowered testosterone levels and similar symptoms.
You’re getting on my wick…
Ha. So we DO have an excuse for being irritable and bitchy. Sort of…well, not really…because it’s not that helpful, is it? Usually most of us just feel worse when we let irritation get the better of us and say or do something we wish we hadn’t said or done. However, when we know hormones may be playing a big part in our mood we can use our awareness to catch ourselves in our irritation and then choose our words and actions carefully, with more sensitivity. Not always easy but likely to result in a better day. It’s also OK to acknowledge we are feeling easily irritated!!
The more we talk about menopause, the more men and women will be able to identify when peri-menopause and menopause start. We can then learn about the options for managing the unhelpful symptoms. Finally, both men and women can then practice and take responsibility for being supportive, tolerant and understanding of each other and ourselves as we go through these changes. Maybe then, we’ll be able to avoid mountains from molehills and the extremes; relationship challenges and break down, negative outcomes for career and lifestyle.
Now imagine dealing with all of this…and cancer…and chemo.
Except, there’s more.
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.
2 Astbury-Ward, E. (2003) ‘Menopause, sexuality and culture: Is there a universal experience? Sexual and Relationship Therapy’. Journal of the British Association for Sexual and Relationship Therapy. 18(4), 437-445
³ https://www.theguardian.com/society/menopause – Menopause café and challenging stereotypes about aging.
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
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.
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.
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.
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:
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!
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
Images: Upright Hair – mohamed-nohassi-531501-unsplash & Me
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: Alopecia, Alopecia areata, Cancer, Chemotherapy, Hair, Hair loss, Myeloma, Psychology, Receding hairline, Side effects, Sticky eyelids, Trichotillomania
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.
Then it dawns on me. I didn’t receive my steroids today. Dexamethasone, I wasn’t given it and I was so busy watching Americans on Prime to distract me from any pain of the cannula going in, that I didn’t do my own checks. Bugger. Now what. Now, I’ll have to telephone the Haematology Registrar on-call and see if I can take my day 16 (tomorrow’s dose) of Dex now. It’s not a great time of day to be taking a steroid, they’ll keep me up all night…but hopefully I’ll feel better. Priority right now: feel better.
Then I realise. Pissed off. If I take the dose I have at home, I’m going to have to go to hospital tomorrow now, the very day I didn’t want to go and normally don’t have to go near it. And on your birthday, darling Man. I don’t know how long it will take, to pick up a steroid on a day I am not usually there. VERY PISSED OFF. My feeling wretched, my having a problem, my having to go into problem solving mode, my having to deal with the impact, accept the consequences, pissed off…it was all so preventable. Annoyed. Sad.
I ring the hospital, ask for the Haematology Reg on call. Operator says she‘ll page him and he’ll call me back very soon, often straight away. I wait. 40 minutes later, I’m still waiting. I’m so sick, I can’t get angry. Hubby calls. The operator is surprised I haven’t heard. She pages him again. He calls back in 5 minutes. No apologies, no explanations (e.g on another call). He runs through the usual questions – have a vomited? Not yet. Do I have a temperature? No, just the sweat, cold combo. Do I have diarreah or constipation? No. Just pain, a lot of pain and nausea that pills don’t kick. Finally, he confirmed I should take the Dex I have at home and go up to hospital for another dose tomorrow.
I take the steroids and Hubby manages to find another stronger anti-nausea tablet amongst my large array of pills in ‘the pill box’ (a large bread bin, works a treat). I cuddle up to Hubby, focus on his breathing and wait for drugs to kick in. By the time we move it’s 1am and despite the steroid, I feel like my body is now desperate for sleep. Good. Happy to oblige. I drag myself upstairs to bed.
Hubby’s birthday day. I feel a whole heap better but very drained. He drives me to hospital. I go to get my steroid and my fear about how the day may unfold starts to be realised. Cancer, you bit*ch, you don’t make life easy. My steroid isn’t ready. I don’t get to drop in, collect it and get out again (my hope). Despite having an email back from my specialist in the morning, acknowledging that a) my Chemo, carfilzomib is hard to tolerate without the steroid and b) containing his request that I be dispensed the steroid today, directly from the Chemo Day Unit (CDU) and c) that the clinical trial nurse should call the CDU nurses to make sure they have the steroid ready for 9.30am – it’s not ready. I even get there about 10.40am, figuring I’d give everyone a bit more time to communicate and prepare.
I explain again, what has happened. The CDU nurses won’t give me the steroid and when they call the Clinical trial nurse for information something is lost in translation so they now think they need a prescription before they can give me anything. I show them my box of Dex with the prescription and dose details AGAIN. I start to get upset. Really upset. I could be waiting for ages for the clinical trial nurse to come to the CDU with a prescription (I’ve been through this before so know how long it can take) and then if I must go to the regular hospital pharmacy for it to be filled, I can write off another hour, it is hideously inefficient.
Tears. Yep they’re coming. I cry. M the wonderful receptionist comes to comfort me and says ‘this is not like you’ and to find out what’s going on. I fleetingly wonder ‘what is like me, when I’m here?’ I feel bad because I know the team have had someone die today and one of the head nurses has had to race off and manage that. My tears over impacting my day with my hubby seem trivial in comparison and yet not, nothing is trivial in this Cancer journey. It’s all bearable for me most of the time, yet it is all sh*t too. I cry some more.
Nurse L comes to my rescue. She looked after me all last year and I missed her when she left to do a stint in private practice. She asks what is going on, I tell her, show her my empty box of Dex and say I just need my day 16 dose because I had to take it last night after not receiving the steroids yesterday. I don’t say which Nurse forgot to give me the steroid. Nurses are human. We all make mistakes. She is usually so so good so must have had an ‘off day’. AND, it was my mistake too. It’s not really fair to hand all responsibility and agency of my care over to a Nurse. After all, I bang on about being the agent in your own health and treatment for as long as you possibly can. Nurse L goes and gets the Dex dose immediately and finally I get to leave.
Thank you M and L. You saved my day. I know my Clinician plans to talk to the nurses about how the steroid was missed but I don’t worry about that now. I know mistakes happen yet between us, the Nurses and I are usually so good at going through a checklist each time. It’s a shame it went wrong.
On this day of all days.
Psychology Tips – Working with your and others’ mistakes
Admitting mistakes can be hard. Research shows there are links between our beliefs about whether we can change our behaviour or whether our personality is fixed and if mistakes and admitting mistakes are perceived threats.1 Cognitive Scientist, Art Markman summarised the research results2 and explains when you believe that your behaviour can change, you are more likely to be willing to admit responsibility. You recognise that by admitting what you have done wrong, you can work to make it better, to grow and so you are not threatened or are less threatened by admitting mistakes.
People who do not believe that they can change, can be stressed by admitting their mistakes, because they believe that those mistakes say something fundamental about who they are as a person. Understanding that people see their own mistakes as a threat, and have different beliefs about their own and possibly others’ ability to change, can help us to remember to avoid showing unhelpful frustration and anger when managing mistakes. We can all change our behaviour. We can all learn from our mistakes. We can all repair and improve relationships. It can take some people longer than others, to recognise that change and growth is possible, especially when their starting point is one of: I and others have fixed personalities and mistakes are flaws.
It’s easy to get frustrated with others’ mistakes when we feel something is unfair (it can be completely justified) but does it help the situation to show the frustration? A compassionate response will get you more powerful results and responding with anger and frustration negatively impacts 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.
1 Who accepts responsibility for their transgressions? Schumann, K and Dweck, CS. Who accepts responsibility for their transgressions? Pers Soc Psychol Bull. 2014 Dec;40(12):1598-610. doi: 10.1177/0146167214552789
2 Markman, A. (2014) What makes some of us own our mistakes and not others?
(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.
Shadow and Dex pictures by Me
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Psychology for Cancer, Symptoms and Side Effects Tagged with: Cancer, Carfilzomib, Compassion, Consequences, Dexamethazone, Frustration, Mindfulness, Mistake, Mistakes, Myeloma, Nausea, Psychology, Sick, Steroids, Sweats, Tears, Worry