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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’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
Ahoy there…you may think I’ve been on some desert island and that accounts for my lack of communication. You’d be right. I’ve been in a world full of ‘I should blog’ and ‘I am blogging, it’s just that it’s in my head or on a random note, emailed to myself.’ That’s the funny thing about blogs…they’re there all the time yet not always out there….
I don’t know why I’ve put off getting my thoughts and stories out and about. I suspect it’s because I’d like to provide a great psychological tip each time I blog. Sometimes I can’t think of something I haven’t already said or I get tangled up in ’getting it right’. Then I end up not doing anything.
Paralysed. By what? Thinking something may not be good enough? Yet that’s not what this blog is about, at all. It is already enough. I blog when I can and when I do. I blog what I can. No more. No less. It’s helpful to me and hopefully, to one or more of you. It feels creative, a release.
It is what it is. I love that saying. It is so black and white yet YELLS acceptance. Can you visualise that? A phrase exuding and yelling acceptance. I love metaphors. I think I’ll ask my friend Sapphire if she might have a go at sketching this one, if she has time. She either will or won’t: both are fine.
I am doing fine. My mantra from the meditation I enjoy: I am doing fine. I am in my fourth month of the 18-month maintenance cycle of treatment. My results are no better, no worse. I get tired. My feet tingle sometimes painfully with neuropathy. I ache. Sometimes I have trouble concentrating, making decisions or being articulate. Often, I am the opposite. Out and about. On the go. Functioning well. Being me. Alive and living.
I said a very solemn eulogy last week. To my umbrella. My favourite umbrella that has been in the family for 13 years. 13 years! Do you know how unheard of, this is? It hasn’t been left on the bus or on a tube or in a café or lent to someone without ever being returned. It was a miracle of survivorship. It outlived all expectations. Especially with my record for losing things.
I loved that umbrella. It was a deep British green with a Jaguar car logo on it. A strong powerful leaping Jaguar. I love cats and especially big cats like panthers and jaguars (I even follow Jacksonville Jags NFL team since seeing them at Wembley a few years ago) and I have always liked the shape of Jaguar sports cars. This umbrella was perfect for me. It was small, light and a marvel of efficacy. Even the spring mechanism worked well every time.
I was so sad to see it go and I am yet to replace it. Living in England, particularly in Spring does not allow long before full commitment to another umbrella is required. It is of course, raining heavily again today. I wonder, will I channel my wonderful big cat umbrella and outlive expectations?
Who knew an umbrella could have friendship qualities? Always there. Reliable. Helpful. Comforting. Safe. I’ve been known to buy crystals, carry stones in my pocket at times. I wonder what other ‘things’ help others out there with Chronic Illness, Pain or Cancer.
I was sitting in the cinema recently and the lady next to me sneezed. Over and over again. When I’d sat down, I had noticed she had a blanket over her knees and thought nothing of it. After her first sneeze, a thought exploded into my head…oh sh*t, does she have flu? I don’t have a mask. Bugger, my immune system can’t get away from this one. Panic stations. Find a tissue, FAST. Cover my nose and mouth quickly.
I turned my back to her, snuggled into Hubby. I felt sad that a visit to the movies wasn’t straightforward anymore. I tried to focus on the film again. Then I started thinking, What was that like for her, for me to turn my back? Did she care? What did she think? Did she notice at all? If she did notice, was she making incorrect assumptions about why I moved? I hoped she didn’t think I didn’t like her, or feel rejected. All while these thoughts invaded my movie time, I prayed she didn’t sneeze again. She didn’t. She coughed, loudly. I felt angry. How dare she bring her bugs to the cinema. Get real Janino, everyone sneezes and coughs. Sh*t, sh*t and triple sh*t. I buried my head in Hubby’s jumper.
I started debating whether there was any point in turning away, covering my face with the folded tissue, trying to prevent bugs access to me and my vulnerable body? The little blighters get through anyway if they are going to…after all, most bugs are small enough to pierce a basic mask. That’s why I wear two masks whenever I’m on a plane. Picking up bugs, its unavoidable at the end of the day, isn’t it? Getting sick is probably unavoidable too. All I can do right now is keep giving my body the best chance of fighting off infection by eating well, being kind to myself, doing what I know to do to support my body. Accepting I’ll pick up bugs sometimes and focussing on the film is probably more helpful than getting angry and worrying about preventing any imminent attack.
We are under attack, by BREAD!
Did you know that there appears to be a big, big problem with much of the wheat we eat around the world – it is TOXIC! This is crazy, right? Glyphosate (in Roundup !!!) is used by conventional farmers, who spray it on their fields between plantings to reduce weed populations and for drying out grain and bean crops so the yield is higher. Did that sink in? A toxic weed killer is sprayed on much of the wheat that ends up in the bread we eat! What’s more, it has been sprayed on our bread FOR YEARS: bread that most of us have had in some form or another, EVERY day.
I’m so shocked! And angry!! The Netherlands have banned it. France are changing their legislation about it. The UK soil association is trying to get the UK government to do something about it. While the whole debate is becoming highly politicised there is evidence for the toxic cumulative effects on people’s health!!! Check out the articles below.
Frankly, I don’t eat a lot of non-gluten free bread these days anyway but I’m certainly going to try and go for organic only now too. I dont fancy consuming ANYMORE Glyphosate or Roundup! It is so damn hard to avoid toxins in this world! Or to know who / how to trust food producers. It will be so expensive if, to keep ourselves well or prevent disease, we return to buying EVERY food item at a speciality, boutique, or independent provider. Most of us simply can’t afford to do that, or it is impractical, even when we are able to work full time and whether we have cancer or not.
We live in wonderful times. We live in scary times.
I miss my brolly.
Check out these articles
Photo of the new version of my old brolly by http://davitcareditions.blogspot.co.uk/2010/11/jaguar-merchandise.html
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Last week and this week have been soooo much better. Less tears. While the black cloud of overwhelm still lurks, I feel calmer, less irritated by everything, and more able to make a healthy choice in the moment. Five minutes, have been my saviour.
I’m no perfect human, no magician. Getting back on track isn’t easy. Getting back on track – isn’t instant. It’s not about righting wrongs overnight. It’s not about becoming superwoman again; getting into action with everything on the ‘crazy to do list’. It’s not about suppressing the negative thoughts, ignoring the fatigue or pretending to be happy.
Last week, my best achievement was deciding to commit. Commit to doing, what I know to do, to lift low mood. Then doing it, for five minutes at a time. Yes, five minutes. Anymore time is a bonus and not mandatory in anyway. A big commitment? Yes!
In the face of depression, difficulty concentrating, fatigue and everything I acknowledged in last week’s blog, yes, making ANY decision, taking ANY action, takes something. Some days, brushing my teeth, having a shower or putting on clean clothes is a commitment. It takes valuing myself. It takes being in the moment, one step at a time.
I’m worth it.
I’m worth investing five minutes, once per day or eventually five minutes, six times a day, to do the things that help and help me, to feel more like me. It’s not easy and I know I go on about it, being compassionate with myself. I try to not buy into my ‘I’m not good enough’ belief, when I don’t manage five minutes one day or I only (loaded unhelpful language) manage five minutes a day. This is super important and the key to keeping the commitment to doing five minute wonders.
On my first day of commitment to five minutes of healthy, helpful actions, I brushed my teeth, washed my face, and got dressed – tick. I got myself up the hill, to my blood test appointment – big tick. The rest of the day passed somehow.
On my second day of commitment of five minutes, I managed to go back on to the website I’d had so many problems with and order the muscle builder protein recommended by the Nutritionist. Its arrived and I’ve tried it. It tastes ok and hopefully will work well for me!
It feels good to get back on track with healthy eating; one step, one five minutes, one day at a time. This doesn’t mean I beat myself up for the sugar filled chocolate bar I had yesterday while at Chemo. It means I patted myself on the back for eating well for the rest of the day, for not eating any more processed/refined sugar all day and for achieving my calorie count target for muscle building.
On my third day of commitment I managed to go to the gym! The gym! I went for five minutes on the cross trainer; I stayed 20 minutes. I was very tired but felt pleased that I had gone. It felt good, to feel pleased, about something. I went for another five minutes, two days ago, stayed 45 minutes and had more energy. I loved the sense of achievement, of being good to myself, doing what I know is important for me to do; build muscle so I can manage the cancer and the treatment as well as possible. It was ok to feel tired later that day. I felt calmer which was a bonus and good to notice.
On another day, for five minutes, I thought about my values, aspirations and those things I used do that gave me pleasure. I looked at whether I had been taking any actions in these areas. I wrote a list and planned some five-minute actions – not all of them for one day; one five-minute action per day. Yoga is near the top of the list. Up until a few months ago, I used to do this, a lot, each week, at home mostly, with the wonderful Adriene on YouTube. Interestingly, five minutes of yoga hasn’t made it back into my world yet. That’s ok. I don’t have to do everything all at once. Maybe next week will be the week I commit to five minutes of yoga, on one day, and then another, and possibly another.
Yesterday, I did something that really makes me feel joy. I had an Italian language lesson. I didn’t worry about whether I was smartly dressed or had make-up on; my teacher doesn’t care. She cares more about whether I am having a chance, making the time, to listen to Italian every day; she doesn’t make me wrong when I haven’t. I loved it. I felt genuine pleasure when getting something right and even when I got something wrong and understood why. I have learned Italian on and off for years (more off in recent years as academic work took over) and it feels great to be doing something that is so important to me. This was a powerful step forward in lifting my mood. Now I can plan five minutes of listening and Italian language practice every day. It doesn’t have to be more. Seriously, a five-minute commitment works wonders and is much easier to contemplate than an hour! If the hour of practice comes at some stage, well that, is simply a bonus. If I don’t do the five minutes every day that’s ok; every day that I do it, is a good day.
Overwhelm still hovers. By the end of last week, I noticed I taken on too much. I tried to allow time for rest, quiet, peace yet the time in between five minutes of healthy action didn’t always or often, feel restorative. Planning five minutes of deep progressive muscle relaxation is now on the list. Sitting outside for five minutes and deep breathing is also on the list. The list doesn’t have to rule the show; it’s just a tool to remind me of possibilities for five minute wonders. Things to try that I know have worked well in the past or may work well now and in the future, if I give them a go and commit for FIVE minutes!
A fine balance, this doing versus not doing too much. Time for simply being is important too though when it rolls over into dwelling, rumination and avoiding, it no longer is being. Socialising and avoiding withdrawal from others is super important for lifting low mood. Getting back into the world is key. Five minute excursions outside my house to the local café, newsagent, supermarket, anywhere where I need to navigate around and be with people for five minutes; it all helps me reconnect with the world.
On the flip side, when friends suggest a catch up, getting myself there is really hard some days, especially on those days when I feel like I just want to rest, sleep and keep sleeping. Staying only five minutes might also seem strange but when I frame it like that, telling myself ‘I’m going for 5 minutes’, it helps. Letting my friend know upfront that I hope to stay longer but a short time might be all I can do, is perfectly fine too; good friends understand. Right now, too many commitments each day or on consecutive days is unhelpful; overwhelm can loom large. I’m taking it a little slower than I was, before this patch of overwhelm hit. Now the dark clouds are slowly lifting, I am taking my time with it, giving myself time and space to get back to feeling like me. I try to remember that saying ‘No’ or consciously choosing to NOT ‘do something’ can be a valid action too.
Five-minute actions, being social in a manageable way, doing things that make me feel good, feel pleasure….that’s what I’m working on. Smiling is back on the menu. Five minutes of smiling behaviour can work wonders too. Remember this isn’t about pretending to be happy. This is about your body and mind experiencing a smile: physically, chemically and eventually, emotionally. Right now, it’s a practice, a behaviour, not a spontaneous event. I’d forgotten about the power of smiling behaviour and that’s ok. I’ll do that five-minute wonder, today. In fact, how about now?
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Hello Blog. I’ve missed you. I’ve been writing to you, in my head, a lot. There have been many opening paragraphs that have never made it to fingers and keyboard. Today is a beautiful day, helped along immeasurably by clear blue sky. Today is the day I put the last month to bed, put it into the past and leave it there, take out the learning points and not allow past negative events to colour my future.
I really wanted to say I haven’t forgotten you and provide a brief update…a reality check…
Health-wise. I have been good on the Myeloma presence front; it’s still low. I have been knocked for six coping with a compromised immune system. Two viruses back to back, an extended chemo/bronchial style cough, even worse sleep patterns (didn’t think this was possible) and fatigue, weakness and low motivation to do anything…these have left me reeling with a very low mood. I’ve felt like a patient, an invalid, more than ever before in the last three to four weeks. Especially when I end up in bed for days, need to avoid being on public transport and wear masks more often. Concentrating to write seemed like an impossibility. I’m here now.
Despite my low mood and fatigue, I managed to push ahead in small chunks with some of the ‘to do’ list. No wonder I’m overwhelmed. Have you ever felt like your ‘to do’ list doesn’t have any small, mundane admin items on it? Instead it is a long list of huge, life-impacting topics that all require maximum brain power, planning and the ability to make decisions – something that is very, very elusive if you are even slightly depressed.
My list has included (though not exclusively by any means);
Finance. How to finance the next few years, mortgages, budgets, investments, trying to find independent financial advisors, palliative care costs, home care costs…the list goes on).
Clinical Meetings. I’ve been chasing meetings with clinicians to get a fresh, up-to-date view of the realities or at least their best guess on what my next few years will look like; how mobile I’ll be, how much treatment will be needed, whether I can do, plan for, bother costing out, some of the life passion things that are important to me – travel adventures, skiing, swimming, road cycling. Securing these meetings has been a challenge and ongoing for weeks now (still unresolved) all because I want to see the original clinician I met and not my trial lead. Dr L is both a realist and optimist. We have worked together for months now. It feels intensely important to hear up-to-date details from someone else, so that it lands in my head with clarity, so that Hubby and I can be exactly on the same page. This is why I am trying to secure a meeting with Dr B. He was the one who was honest about worst case scenarios, the very real lesions in my spine and possible paralysis if treatment was not started. I need to hear it again; where I am and where I’m not, what I must do. I need pointers on how to live. Do I maximise the next two years assuming they are my best or plan pensions and assume I’ll live a lot longer and with mobility? Therefore, what will I need to finance? I know Dr B will find this tough – I’m under 50 after all. I really need his help with this.
Work. How to work, earn income, contribute, have energy to work. Figuring out how much I can work, what work should look like so that I can strike a balance between treatment, time for doing things that are healthy, fun and will give best chance of prolonging life expectancy and support good quality of life.
Academia (My Legacy?). I worked on my first paper and was rejected for the second time by one journal. I’m now working out how to revise and resubmit to another journal, getting ready for the all so common rejection again while visualising acceptance. I’m also working on a second paper, one a senior academic in my viva encouraged me to publish.
Nutrition. I lost too much weight. I had to stop my super careful eating. I tried to reintroduce dairy. I felt worse. I stopped the dairy. I couldn’t get enough calories in without eating constantly which is impossible if you want to do anything else in life! I reintroduced the odd treat (good quality bacon and cake once, twice per week). I felt better and worse. I was advised to put on lean muscle and get my weight up. My weight is up to 63.8kg. I feel good that my weight is up and bad that I’ve introduced things that welcome cancer into my terrain again. I feel unable to control things. I have no appetite and then I’m ravenous. I find it hard to do food balance. I want it to be healthy all the way or…I can’t entertain, the ‘not at all’ option, it feels irresponsible. My nutritionist has recommended a medical protein powder, not high in calories but specifically designed to help create lean muscle for people losing weight due to illness. I try to order it. The site won’t let me. I contact them. They don’t get back to me. I cry with frustration. I finally ask the Nutritionist to sort it out. She does. I haven’t had the energy to try again. I will, this week. I need to feel back in control. I miss enjoying food, I used to love it.
Last and by no means least, Parents and Friends. Spending quality time with Mum and Dad; how to do that, when to do that, how to have the energy and good mood for that. Ensuring we don’t feel like flatmates co-existing under the same roof and make sure we make the most of the time we have together – how?. Sounds easy but it’s not. A great, precious, long, hard-to-adjust-to five months (not sure how that happened… and I laugh that Mum and I laugh about that now). Yet as it spins into the last half of their stay, it is quickly feeling like I’ll look back and it will have gone quickly…
Chemo. This crazy, demanding to do list is all with a backdrop of six days of Chemo, recovery days where I have felt worse than on Chemo days, many many days when I have just wanted to hide under the duvet with the cat for company and stay there for weeks.
Low mood. I’m in it. Up to my eyeballs. Depressed. I’ve been resisting it. Resisting acknowledging it but I’m there now. I feel demands on me everywhere, a sure sign of low mood and overwhelm for me. A weekend away with hubby last weekend, staying at a very generous friend’s home near the sea, culminated in a roller coaster ride and frequent mishaps. From misread maps, and ten minute walks turning into a 40-minute wait in the rain and taxi, to random laughs (singing Delilah with a bunch of strangers in a gorgeous restaurant with fabulous view), deep tonic breaths of sea air, cocktails and a feast, before spending Sunday crying uncontrollably (on the train, at a restaurant, in a cab, just standing, sitting, in the shower, trying to put makeup on; I gave up, behind my mask, walking in the street, everywhere, leaking.) I’ve been so withdrawn. Haven’t wanted to be around anyone except hubby. And have not been a fun person to be with when we have been together. Trying to be practical, talk about future, plan, create with him; this just exacerbated difference in wants, needs, timeframes and how difficult these discussions are. Overwhelm took residence. Overwhelmed. I landed. Here. Rock bottom. Time to acknowledge my situation even more than I have already. I have cancer. Its terminal. It’s Sh*t. It has turned my life upside down. It’s created extreme intensity across all areas of my life. It’s ok to be overwhelmed. It’s likely to happen many times over the next few years and I’ll be alright.
Off track. All the things that help overcome and prevent low mood have fallen off. I’ve fallen off the track. It’s time to get back on now. This low mood feeling won’t disappear overnight. I do know what to do. Start small, just start. Compassion. Compassion. Compassion. Work on basics; begin exercising again, for 5 minutes, an hour, then a few times per week. It doesn’t have to be all at once. The mindfulness and meditation have slipped to once per week. Get it back to daily. It can be five minutes, 10 minutes and eventually longer. Put a good sleep routine back in place, get up at the same time, get rid of the mobile from the bedroom, breathe, use progressive muscle relaxation. Order the protein drink. Get some good music back into my life; it’s been missing. Look for the positives.
Today is a good day. There is a blue sky. I’ve just been to the gym. I’m doing fine. To coin the essence of a phrase my fab friends use on their date nights and that they wisely borrowed from Julia Roberts… If I forget to tell you later, I had a great time today.
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
My blood spurts everywhere like a regular Fright Night or Halloween movie. The nurse is trying to put a cannula into each arm, a bloody big cannula, much bigger than my normal (ha ha) Chemo cannula. The nurse is new to this treatment and seriously nervous. Great. I’m not in the mood today. The mood. The mood where I am happy to be part of someone else’s learning curve. I’m just not. Now she’s made a mistake and there is blood everywhere. My blood. My very, very, precious blood.
Another nurse pounces with a clamp and gets everything back under control. For now. Except, I feel sticky. My leggings and legs are spattered with blood. The pillows and bed coverings are no longer pristine white. Stressed, I blurt out, ‘I don’t want to be anyone’s experiment’. The nervous nurse (NN, my nickname for her) looks horrified. She reassures me that I am nobody’s experiment. Her body language and voice sound like she is trying to convince herself that everything is OK. I think ‘I can’t afford to lose any more blood; get me someone who has done this A LOT’. But I don’t say this out loud. I hope it, instead. I calm down a bit and give NN, a smile of, ‘it’s ok’. It’s not OK but I figure I need her to be calm. Everyone makes mistakes. In the grand scheme of Myeloma treatment, this wasn’t a bad one (so long as I don’t end up needing that runaway blood).
I am in the Apheresis unit, finally all wired up (ready for ‘take off’?) to a clever centrifuge machine (very CSI) labelled 3OJO (MOJO with a 3? A machine with 3 times the MOJO?). Anyway, this machine specialises in taking blood out of one arm (Vampire-esq), separating out plasma and stem cells and then giving what remains of my blood, back to me, through the other arm (Angel-like). Genius! my niece would say.
I try to relax. The machine’s sound reminds hubby of ‘‘beedie beedie’ so we nickname it, Twiki, and completely ignore the OJO’s in the end. Do you remember the TV show called Buck Rodgers? Twiki is a silver robot (cute but with unfortunate haircut) known in the show for saying ‘beedie beedie’ to everything. Very effective. I’ll think I’ll use it.
I’m quite intrigued by my blood and its component parts…hanging in a bag next to me is the plasma, a funny yellow colour and next to it, slowly, salmon pink (apparently, that’s a good colour) stem cells appear. Also on the line in bags are saline (isn’t it always?) and an anti-coagulant. My lips begin to tingle strangely and I feel a bit faint. I let the nurses know. They have warned me this can happen. My calcium level is ramped up and I’m lowered down a bit in the bed. A song pops in to my head…Blood, Blood, Glorious Blood…There’s nothing quite like it…My Glorious Blood.
Boredom kicks in for hubby soon after arrival, I’m not very talkative today. I can’t sleep because to help collection along I am required to pump the stress ball, all day, only taking breaks for a few minutes every 10-15 minutes. Hubby checks out all the bells, whistles and knobs on Twiki and marginally resists touching them (knobs after all) and is now entertaining himself by dancing on the spot. I’m trying to work out which music he’s listening to because he occasionally is singing out loud, unintentionally I think, and boy his lyrics are dubious! The nurses and I catch a look and laugh. Glad he’s got a day job! Though I’ve secretly always loved his dance moves. I still can’t work out which songs he is listening too. Turns out he’s immersed himself in 70s and 80s and he’s running through Hall and Oates hits (would never have guessed). We share headphones and have a laugh with the past. Today is turning into a retro day.
I arrived at 8.30am and it’s now 5pm and I too, am very bored; so ready to be out of here. I’m waiting for lab results to come back and say they’ve taken enough stem cells. For the last four days, I’ve had G-CSF injections that stimulate the stem cells to move out of my bone marrow and into my blood so Twiki can collect them. This is preferential to the other option of having them collected directly from the marrow (painful, long, more chance of complications, I suspect).
The injections have some seriously weird side effects; they cause pain from inside my bones (ironically similarly to the way Myeloma does…there are so many ironies with this overall treatment process, seemingly making things worse in order to make things better!). At random points, shots of pain would pulse from my rib cage or my pelvis, take my breath away and stop me in my tracks. It would usually be gone within 5-10 minutes and then be back again 10 minutes later or half an hour later or whenever it decided!
Lab results this morning told me the injections had ‘done their thang’ and the detectable level of stem cells in my blood (CD34+ test) was well over the count required to go ahead with Twiki’s collection manoeuvres. Thank goodness. The collection target is 7 million stem cells per kilogram of body weight and I hope it can be done in one hit, today. The results come back and they are good but I still need to rock back up tomorrow (and take another injection). They have collected 5 million. A few more are needed. Hubby and I walk home slowly. I feel shattered.
I’m baaackk! The next morning is a funny affair, no more escaping blood and instead a new approach. Yesterday’s senior nurse seemed to be cautious in approach, going slowly and setting things up so blood clotting was avoided. Today’s senior nurse explains she prefers to deal with problems when they arise and ‘we’re going to go for it’ and monitor everything carefully. Funny, I thought coming in two days in a row for the same treatment would ‘be the same’; a standardised process. I hadn’t factored in the human element and the nurses’ different strategies. Today’s target is 3 million stem cells per kg of body weight so info is plugged into Twiki and I lie back and ?? think of England? More like think ‘please please collect everything needed quickly’. It’s an all-day affair again. My potassium and calcium levels need propping up so I go home with extra meds to add to my ever-growing list.
The call comes through an hour later; they’ve collected another 5 million. Excellent that’s 10 million stem cells altogether. They’re sent off for cryopreservation (storage in liquid nitrogen at some crazy temperature, −196°C). I’m relieved. Maybe that’s enough for three transplants in the future. Maybe I’ll live longer thanks to these. If that’s the case then this last week has been a tiny investment; completely worthwhile.
Turns out from discussions with my clinician later that three transplants are not routinely given at the moment and there is no evidence supporting their benefit. Instead, the transplant team would usually spilt the 10 million stem cells gathered into two larger lots, for each of the two transplants. Supposedly there have been some benefits found for higher amounts of stem cells being used per transplant.
Oh well, you never know. By the time, I need the second one maybe they won’t need as many cells after all and I can eek out another transplant. Or my transplants will be so successful I won’t need a third one. Or it will be what it will be, completely in line with current evidence and practice. I’ll worry about that when it happens.
As part of the clinical trial I am on, I’ve been randomised to another four months of chemo (Carfilzomib, Cyclosphamide and Dexamethazone, half the Dex dose than in the previous four months) rather than an immediate transplant. I don’t need to worry about the transplant details right now unless something goes a bit wrong and the Myeloma comes back with a vengeance sooner rather than later (after all it is always going to come back). I crash for two days (the cat loves it) and feel really shattered for the week.
The good news about my Myeloma is that its presence in my body after the first four months of Chemo has dropped; the IgG kappa paraprotein level is down to 6g/l after being as high as 42g/l. It’s not quite the 100% response rate I was hoping for but it is damn good. It is not usual for this rate to rise again for a year. I’ll have regular tests and jump on it if it decides to buck the trend.
I’m a bit low in mood and I think this is mainly due to low potassium and not knowing what the next phase of treatment is. Dealing with uncertainty is tough and coping well with it, ebbs and flows. That’s normal. I have talked about this in previous blog posts. I’m also nervous (my turn). I have a pet-ct scan coming up this week. Will the radioactive sugar stuff sent into my body find new lesions in my bone marrow, new weak spots or confirm that the treatment has worked brilliantly so far?
Maybe it is a good time to explore my relationship with illness and health. I can step out of project mode for a moment, round one of treatment has been accomplished. Now, is as good a time as any to face asking myself, in a more structured way, what it means to have incurable cancer, what it means to be ill. Which factors, which thoughts, beliefs, feelings and sensations are influencing my health behaviour, my coping…and not coping?
One established psychological and behavioural model for explaining how we think about, respond to and manage threats to our health is Leventhal’s common sense model of self-regulation of health and illness1. Here are three of the concepts at the heart of the model.
The model is one way of explaining how we go about reducing the tension that arises between holding on and letting go of important values and goals as we come under threat from ill health, disease processes and treatment impact and side effects. Figure1 below shows this in a bit more detail.
I thought I’d use this model to explore my thinking, beliefs, biases and assumptions about my current health. If you are managing pain, chronic illness, cancer or caring for someone who is ill, I hope you find it helpful to ask yourself similar questions. I encourage you to notice the thoughts that pop into your mind without judging them; they may surprise you. When I work with clients who are living with ill health using this model, they often discover something that they had no idea was influencing their sense of self, or making them feel worse or they discover a rule they had imposed on themselves, based on an unchallenged belief about what it means to be unwell or to be going to hospital or taking medication.
Where to start?
I start by asking myself;
what does ‘health’ and ‘being healthy’ mean to me?
what does being ‘ill’, ‘ill health’, ‘being sick’ mean to me?
Do these concepts mean different things when I think about myself versus when I think about others?
What does it mean to be diagnosed with cancer? With Myeloma? What does it mean about me that I have been diagnosed with cancer, with Myeloma? If it was my partner or a stranger with the diagnosis how would the meaning of having cancer/Myeloma be different?
What do I ask next?
I explore a range of questions with myself about the mental representations I have about being unwell and under threat from cancer. While I work through each question and consider my answers, I also explore how my responses make me feel and what I will do to cope with the event and the feeling.
What am I experiencing?
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments)
What do I know about my illness?
Where is my information coming from? (external: medical team, support groups, google, other patients; and internal: physical and mental experiences)
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments, calls from medical team)
What do I think about where the information is coming from?
What do I think has caused my illness? Do I think any of it is my fault? Someone else’s fault? How has my illness come about? What do I think about the cause/s?
What are the consequences for me, of my being diagnosed with cancer? From being unwell? What will I be able to do and not do? Will my life change? How will my life change? How will my relationships change?
What are the consequences for others of my being diagnosed with cancer? From being unwell? How will their life change?
How much control do I have over what is happening to me? Over being sick? Over getting well?
How much do I think and believe my illness is; curable? able to be overcome? able to be managed well?
What do the consequences of the illness (e.g. likely outcomes, treatments, having to have chemo, a transplant, hospital visits and beyond) mean about who I am? what I am? My capabilities? My sense of being a woman? A daughter? A wife? A lover? An academic? A clinician? An exercise bunny? A coffee lover? Looking at all the aspects of my sense of self what does being ill, having cancer mean for each of those and who I am? No change? A change? For better? For worse?
How long will I be ill? Will any changes and consequences be temporary? permanent? If my life changes will I be able to change it back once I am well or coping with the illness? Will it be the same as before?
In addition to any coping strategies captured while gathering responses to the questions above…
How do I feel overall, right now, today?
How do I feel about being unwell? How do I feel about having cancer? How do I feel about each aspect above; the causes? The consequences? My sense of self? The controllability? Curability? How long I’ll be unwell? How do I feel about each of these? How do I feel about my thoughts and beliefs about each of these?
In addition to any coping strategies captured while gathering responses to the questions above…
How will I cope? What am I trying? What makes me feel better? Feel worse?
What will I do? What will I avoid doing? Will I ask for help? From who and where will I ask for help? What will I practice thinking? Not thinking about? Where will I put my energy? What will I focus on? Avoid focussing on?
What emotions will I allow myself to express? Are there any that I am not happy to express? Why?
Appraisal of coping so far
What has worked well so far? What helped the coping strategy to work well? What hasn’t worked well? How did it not work well? What were the outcomes?
What do I want to change, try next, no longer try?
Working through these questions and using this type of model is challenging to do alone and isn’t something that is likely to be done and dusted in one sitting or even one day. It may take time to make the enquiry of yourself and find your answers. Notice the answers that pop into your thoughts, into your head. The answers may be scary sometimes, difficult to acknowledge or leave you feeling upset and distressed.
It is important to be kind to yourself during this enquiry. Its ok to take breaks. Its ok to feel distressed after noticing the answers. It’s a good idea to do something nice for yourself after working through these questions. These are difficult questions for anyone to look at, let alone anyone who is living with ill health or a life-threatening health concern.
Remember the aims of making the enquiry is to
Ultimately, by bringing our mental representations into our consciousness, our awareness, we may be able to pause and challenge some of them, more easily accept others, and create and foster new helpful health representations.
Many patients perceive they can stand extreme toxic Chemo therapy when they also hope and feel that it may result in a cure.3 There is no cure for Myeloma so how do Myeloma patients, how do I, stomach Chemotherapy? Do I stomach it because I hope it buys me time for living and time for a cure to be found, or buys me less pain, less discomfort, more quality of life? How am I managing fear control and danger control? What are my representations of illness? How vulnerable am I? How motivated am I to take self-protective steps? How easily accessible is my motivation? When is it easy, when is it difficult, for me to do the right things, to look after myself, adhere to medical advice, and adhere to the other complimentary advice I have chosen to follow?
Watch this space – I’ll post my answers over the next week or so to give you an idea of what this type of enquiry might look like…and then I’ll talk about what you might do with knowing your answers – how bringing the answers into your consciousness can help us to better manage the challenges that face us, illness based or otherwise.
Right now, I need a break so I only have one answer for you…
1 Leventhal, H., Meyer, D. and Nerenz, D. (1980). The common sense model of illness danger. In: Rachman, S. (Ed.), Medical psychology, Vol. 2. pp. 7–30. Pergamon, New York.
2 Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and health, 18(2), 141-184.
3 Cameron, L. D., & Leventhal, H. (Eds.). (2003). The self-regulation of health and illness behaviour. psychology press.
Posted in Myeloma Treatment, Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: Apheresis, Cancer, Clinical Trial, Fatigue, Harvest, Myeloma, Para Protein, Psychology, Randomisation, Stem Cell Collection, Therapy, Transplant
I have learned a lot about generosity over the last few months. Generosity is something I now realise I have made difficult for others at times and I have not always felt comfortable, when in receipt of it. Generosity can be a strange thing. It can feel like receiving a compliment: pleasant, appreciated yet also sometimes awkward. Awkwardness can depend on how often or intensely delivered the compliment is, and how much I believe it is well intentioned, genuine or even believable. Most often, generosity, offers for help, people taking the initiative to think about someone’s needs and meet them without asking, is very much appreciated and immensely supportive and loving.
Other times though, over-generosity is experienced. This is generosity where what I might be saying about my desire or needs isn’t heard, or is heard but ignored in some way. It can feel disrespectful and invalidating, and take away my independence. I can then be left with conflicted feelings of guilt for not being appreciative enough and annoyance at not being listened to, or believed, about knowing my own needs better than another. It occurs to me that older adults or people living with learning or physical disabilities may feel like this on a frequent basis. This feeling hasn’t often happened to me yet, though has occurred often enough to finally make me stop and think, about how I might impact others when trying to give or be generous. It has especially made me think about my relationship with my parents and extended family regarding giving. It hasn’t always been easy to work out how to give in a way that meets everyone’s preferences or budgets (so people are not left feeling embarrassed or like they need to match the budget when being generous themselves) and still leave a lovely sense of giving, and an appropriate sense of pleasure and gratitude in the receiver.
My logic about it making sense for me to pay for something, during times when I have earnt more or been on a favourable exchange rate or simply wish to be generous as a way of showing love (like feeding people), doesn’t always fit with others desires to pay their own way, use the monies they have put aside for exactly this type of expenditure and retain control over the product, service, experience and spending for themselves. Ironically too, these are preferences I also value and wish to exert when someone is being overly generous with me. Of course, talking about it honestly is a good remedy and preventative measure; one that will be put to the test in upcoming months as Mum and Dad visit. The last thing I wish them to feel is undermined or disrespected in any way.
Generosity is not all about money or gifts, it can also become too much when it involves doing things for others. Doing things that another person doesn’t want or need, or doing something that only partly fits a person needs, can be difficult to receive. The receiver can find themselves having to manage the other person’s feelings; how to be grateful and appreciative while considering whether anything is said about ‘please don’t do that again’ or ‘that’s so generous and unfortunately I can’t use/eat/keep it’. Instead of feeling helped and supported, the very person the giver wished to support, can be left feeling with ‘another thing to do’, ‘anxious’ or ‘overwhelmed’ and at worse wanting to withdraw from and push away a person or others’ offers of help.
Studies show that there appear to be many motivational, cognitive, and situational factors that influence helping behaviour and altruism1. Giving and receiving is not as simple as we might think; arousal and emotions are involved. Both givers and receivers don’t always get what they hope for.
Whereas giving a gift out of guilt is linked to the giver feeling more of a connected relationship, receiving a gift, given out of gratitude, is linked to feeling a more connected relationship. Giver and receiver experiences can be very lopsided in each generosity interaction.2
Similarly, to selfishness, too much selflessness may lead to rejection. It can be viewed by receiving others as undesirable, causing discomfort by highlighting gaps in their own virtues or be deemed to be socially rule breaking.3
Generosity is a curious beast, worthy of reflection and application of open communication to ensure it doesn’t slip over from loving support to being unhelpful and disrespectful. Hopefully my understanding evolves over time and becomes easier, more balanced and my levels of giving become appropriate and intuitive.
1 Dovidio, J. F. (1984). Helping behavior and altruism: An empirical and conceptual overview. Advances in experimental social psychology, 17, 361-427.
2 Chan, C., Mogilner, C., & Van Boven, L. (2014). Gratitude, Guilt, and Gift Giving. NA-Advances in Consumer Research Volume 42.
3 Parks, C. D., & Stone, A. B. (2010). The desire to expel unselfish members from the group. Journal of personality and social psychology, 99(2), 303.
Editorial Support: Stephanie Kemp
Illustration: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
I bopped down the hospital corridor towards the Chemo Unit (listening to a bit of Adele) and started thinking back over this cycle of treatment. It’s not a good or bad news story. It’s a GREAT news story. Yes, there are a few side lines about niggly things, just to keep it real. Great news though; we can always do with a bit of that, can’t we?
Music – Music was back, yay! All a bit eclectic, and hey, that’s how I roll!
The theme-tune from Cheers: Where Everybody Knows Your Name, Gary Portnoy; On the Level, Mac DeMarco (calming and grating at same time); The Only Way Is Up, Yazz; Rapture, Blondie; An hour of Radio 1 in an afternoon; Right as Rain, Adele (transpose talk of lover with Myeloma; it works!)
Also gobbled up podcast S-Town, Serial Series 2 (Series 1 was great too).
Here’s a graph. I love a good graph, don’t you? I especially love this one as it shows some important stuff going in a mighty good direction. Cancer presence is trending down. My chemo response rate is trending up! Yeah, baby!!! I’m not fighting with Myeloma; I am guiding it to the door, hoping ultimately to close the door behind it for as long as possible.
The great news
My para-protein level, the indicator of those unwanted Myeloma plasma cells (now kicked to dust over the first two cycles of Chemo) is looking good, very good. My results have come down: from 40 g/l at diagnosis, up at 42 g/l when starting treatment, down to 17g/l by the early part of this cycle and by the third week, 11 g/l. The medical team look for (and the clinical trial requires for next step progression) a minimum of partial response (PR) by the end of the induction treatment (four cycles of Chemo). PR is a drop of 50% of presence of Myeloma indicated initially by the para protein level. The good news is that I had achieved PR by the end of Cycle Two! Also, the para protein level has kept heading in the right direction: down! I still have one cycle to go in this round so a great overall response rate seems so possible right now. And I am still gunning for 100%. I hope I am not too disappointed if 100% is not achieved.
The niggly things
It was a tough start to Cycle Three. I was feeling a bit low. On day one, Si and I attended a clinic appointment with my Clinical Trial lead. It was helpful, and he kicked off the conversation about the stem cell harvest. It was also awful. He went over the prognosis again: the incurable nature of Myeloma. Then he followed with the dramatic strides that have been made in the last two years with new drugs and better outcomes. They are better outcomes: people with Myeloma receiving treatment used to get three years, recently they were getting seven, and now the average is 8-10 years. Great strides, but still short, and I had trouble on that day hearing it all again. I wanted to focus on next steps in the treatment instead, not how long it may or may not ‘get’ me. I left feeling utterly drained and not overly well-informed about the cell collection as I had trouble listening to these points with loads of the other stuff in my mind creating noise.
While the scaredy needles seemed to get over their fear this month (Nurse L worked her magic), a strange rash appeared down my left arm (worse than the little bit I had experienced in early days of Chemo) and it hung about for a couple of days. No known cause at this stage and something to look out for again. My calcium level dropped a bit so I now take calcium tablets too. My urea and creatinine levels dropped for a week. These returned to normal after I focussed on keeping up the three litres of water a day and recognised night sweats might be dehydrating me a bit more than I had thought.
Long waits for Chemo occurred on a few days. One day was over three hours and down to a process issue; these kind of things happen sometimes yet are usually preventable. I gave what I hope was constructive and gentle feedback to the medical team. They were supportive, listened really well and agreed a plan of action. A Clinical Trial Nurse, M, thanked me for being an active partner in my treatment: for my feedback and follow up on things they have mentioned in the past, such as providing patient diaries and requesting new ones if they have not been received. Her comment felt genuine and I really appreciated it. I never want to overstep or cause additional work, yet my nose for process re-engineering and efficiency often rears its head, especially in the NHS. The NHS is awesome (free!) and could benefit from regular process review, especially as when used well, reviews and service/process development ultimately save time and cost. Hey, who has time to do timely reviews? More appropriate NHS resources required! Let’s hope Brexit doesn’t scupper that. Or the upcoming election.
Other great things; small and large
I attended a helpful webinar through MMRF that shared the latest USA understanding and treatments. Lots of promising diagnosis tools and new drugs are coming down the line that will hopefully be available in the UK by the time I need them, after my initial remission period lapses. I also attended a fabulous day at Kings College Hospital where the latest UK-based clinical trial information and outcomes were shared. We were given a tour of the labs in which blood and marrow are analysed, stored (at -196 degrees) and the clinical research facility. After donning the blue plastic shoes, hair bands and protectors to ensure we didn’t cause any contamination, we were taken into one part of the facility where we could safely view the highly-restricted areas and complex equipment – very ‘CSI’ (for anyone who has watched those TV programmes as much as I have). We learned about how contamination is monitored and prevented, and how studies of highly sensitive blood and organs are undertaken. Fascinating, and a real privilege to see ‘behind the scenes’ in this way.
My girlfriend B came along to Chemo with me on day 2 this month and it was so great to have her there. She was calm in a strange environment and we laughed together which was fab. Strangely, despite the circumstances, this day and another day on which we did meditation together and a third day when we made time for a great lunch date (unfortunately just before she left London; would have been great to fit in more of these) really stood out to me as special moments, quality time and very supportive.
We finally christened the table tennis table (Si’s birthday present). I am queen of the table; the presiding champion in the round robin between Si, my brother-in-law and me. Of course, were you ever in any doubt? Si didn’t like that and brought up other stories about me beating him at clay-pigeon shooting over ten years ago during another birthday present experience for him. Ooops! Although, wait until Mum gets here, she tends to claim table tennis crowns!
On the last day of Chemo this month, I wore a dress and two people told me I looked lovely. What a great start to the day. Especially as I felt very tired that morning. Choices again. I could have worn tracky bottoms and a top like I did the day before and that would have been fine. I needed a pick-me-up. A dress and makeup was a helpful move. After all, I felt better. It was great to dance in on the way up to Hospital, feeling the fabric move around my bod. And hey, it resulted in compliments – the dress, not the dancing! Worth it, that little bit of effort. I might not have the energy to do this next time and that’s ok. It was lovely to grab the moment on that day.
Thank you to you, the readers; there are now over 800 users on the Psyching Out Cancer blog.
Psychology – Reflection
Life is a daily, weekly, yearly roller-coaster of good, difficult and neutral events that come and go. Our response to each event – small or huge, the attention we give each, the meaning we add, the willingness to accept the unchangeable – all dictate how we well we cope with the rollercoaster. Our ability to pause, notice, and choose a response, facilitates how much we stop and enjoy the good times, and ensures the more difficult times have less impact on our day to day lives and long term goals. Sometimes though, we forget to pause or find it difficult to pause; this is where in addition to knowing our triggers for unpleasant reactions, Reflection is crucial.
Reflection is defined as serious thought or consideration. In psychology, reflection often involves a therapist reading or saying the client’s words back to the client so that they can hear for themselves what they have said and evaluate the logic or reasoning behind their own statements. You can also be your own therapist with reflection. Self-reflection can be referred to as examination and contemplation of our own thoughts and behaviour; helping ourselves to hear and evaluate.1-3
There can be no knowledge without emotion. We may be aware of a truth, yet until we have felt its force, it is not ours. To the cognition of the brain must be added the experience of the soul.
Arnold Bennett (1867–1931) 4
The lessons I have learned, and psychology skills I have applied, this month have often been difficult to remember to use in a timely manner and I have needed time to notice and understand my reaction and needs. The post reflection lessons have been transformative and confronting; they have led to open, honest debate with myself and communication with others such as in my previous post ‘Killing Me with Kindness’.
All in the Mind, a BBC Radio show presented by Claudia Hammond, is a fabulous resource for learning about mental health (links below). The show often hears from people with experience of mental health difficulties, charities working in this space, expert clinicians, and academics and researchers who explain the latest evidence about incidence and treatment, and debunk myths. In one of the recent episodes, evidence was presented about the power of expressive writing about your experiences and the positive outcomes that were experienced.
Writing can be, for some, a great way to facilitate reflection. Whether it is keeping a diary, or writing a letter to yourself or another, writing about how events made you feel emotionally and physically, the thoughts you noticed, what you were curious about or wondered about in terms of the event, yourself, the other person’s thinking, feelings, reaction, motivations. It can be so helpful to ‘not to make the person wrong’. Instead, focus on the event or behaviour and how it made you feel, how you thought it might have made the other person feel, with curiosity and compassion. Recognise that you may have their feelings and thoughts wrong; be careful not to assume and instead be curious. You do NOT have to send the letter. You do NOT have to keep the letter once it is written, though you may find it helpful to send or re-read them; only you can decide this.
For those that don’t like writing, a Dictaphone, a voice recorder, or even an app that converts your voice to word or pages can be used.
If neither of these appeals, taking time out simply to be and think about a past event, day, week, a particular period, can be useful. Notice all those things above, and also notice what worked well, what worked less well, and what you would do differently or not do differently.
Alternatively, and I highly recommend this approach (which can be done alone or in combination with the others above) solely focus on taking time to sit, put yourself back into the event and be with whichever emotions, light or strong, arise. Allow yourself to feel them, deeply, outwardly with tears, or anger or another response, if that is what arises, without judgement of yourself or anyone else. This type of reflection helps your body and mind to fully experience and process events together. Regular reflection, not rumination where negative thoughts are given repeated attention, but regular curiosity-based reflection, can help process strong emotions.
All regular reflection can help your mind and body notice when similar events are happening again, often earlier than usual, and sometimes even in the moment. This observation then allows for pause and choice of response; helpful or unhelpful, one that serves you well or doesn’t serve you well.
Remember, after reflection, be kind to yourself; your responses and emotions within reflection are normal. If you feel upset or angry afterwards, take 5 minutes or more to do something enjoyable even for a few minutes; take a few deep slow breaths; tell yourself you are ok, safe, good enough; read a magazine; do one yoga sun salutation; make a cup of coffee; close your eyes; do a body relaxation exercise, a tai chi movement, a back stretch or something else relaxing and fun to bring your arousal level down before trying to get on with your day.
Reflection is an important skill for maintaining good mental health and one worth investing time in practicing: through writing, dictating or focussing on your experience in a curious way that allows you to fully experience your emotions.
Cycle Three – done. A roller-coaster and many highlights of great news. Onwards with Cycle Four, the last month of Chemo before the next phase of treatment. Gosh, the time has gone quickly.
BBC – All in the Mind. http://www.bbc.co.uk/programmes/b006qxx9
All In The Mind, Episode including benefits of expressive writing (15 May 17) http://www.bbc.co.uk/programmes/b08n2wcz
Gibbs Reflective Cycle (in Dye, 2011), University of Cumbria (2016)
1 Oxford Dictionaries https://en.oxforddictionaries.com/definition/reflection
2 Alley Dog Psychology Glossary https://www.alleydog.com/glossary/definition.php?term=Reflection
3 Psychology Dictionary http://psychologydictionary.org/self-reflection/
4 A return to the use of emotion and reflection. Helen Demetriou and Elaine Wilson
Images: B, Me
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
It happened again today. Someone said the wrong thing. They didn’t mean to. They just didn’t seem to think. In that moment, it seemed that it was important for them to say what they wanted to say, so they said it. Important to them, not me; about them, not me.
I’m sure they didn’t mean to have their words upset me. But they did. A nurse started telling me HER chemo story, uninvited. Maybe she thought I wanted to hear it, after all she went through ‘hers’ seven years ago and she’s still here; that’s something I’d want to hear, right? Wrong. I didn’t want to hear it. I very rarely want to hear others’ stories.
I didn’t want to hear it this morning when I was running later than usual and really looking forward to a much overdue call with one of my best friends, someone who always makes me feel great, even when we have talked through sad stuff or tough stuff or vented or cried together. I didn’t want to hear someone else’s story when I hadn’t asked to know. The nurse looked at me, waiting expectedly for me to ask more about it. I just wanted her to get on with taking my blood so I could get out there and make my call. She looked again. Today, I had no energy to ‘hold her off’ so I obliged. I smiled and she launched in with more detail and things I didn’t really hear, other than the ‘good luck’ at the end. Another thing I don’t always want to hear.
I couldn’t get out of there fast enough. On top of that the needle had hurt this morning; maybe because she was so focussed on offloading her story instead of taking my blood? She didn’t know how her words landed, she probably thought she was doing me a favour and on another day, maybe I would have wanted to hear her and chat away. How could she know?
I’m scared to write this blog. I think it might be taken the wrong way. Friends, family, blog readers might stop being in touch or think I’m ungrateful for all the contact, well wishes and kindness they have provided to me. Nothing could be farther from the truth. I am so grateful. I’m deeply astonished at the amazing volume, regularity and quality of support, I have received. Although, it hasn’t always been easy to receive it. I have often felt overwhelmed, sometimes smothered and obligated to respond.
There, I said it. Gosh it is hard to say in my head, let alone see it in black and white. I feel instantly guilty…and yet, honest. When I started this blog journey, I said I aimed to be real with it and share good, bad, up, down, times. I almost didn’t do that with these feelings as they feel so controversial, so risky, potentially hurtful; the last thing I want to be, ever.
I feel very vulnerable. What if you don’t understand? What if I describe how I have felt at certain times and I lose you; the very people, the very support, that has helped me get this far, that has helped me to feel loved and never alone. What do I do if after reading this, you don’t reach out again? Or don’t want to? Or think of me differently? Or want to reach out and are left not knowing if you should, or what to say?
I do hope you read to the end of this post. I do hope you understand.
Please believe me when I say I am not talking about any one person; I’m not. I’m trying to share the cumulative impact of these interactions and understand my own response to them. I’m trying to share the overall feelings, curious, conflicted, visceral and confusing reactions I have experienced, when people have been in touch, shown they care, tried to help and asked ‘How are you?’.
How are you?
Ahh, those three little words…’How are you?’. Now that I have cancer, the words, the question, feel so loaded, so complicated, with no easy answer. Being asked ‘How are you?’ isn’t helpful to me. Not right now anyway.
How on earth could you know that? It’s not your fault that you have asked me, many times, that very question; it’s a natural question to ask. You couldn’t know, that I am only now observing my reaction to the words, reflecting and working out for myself, that these three words are some of the most unhelpful to hear. Today, I was reminded that my experience and feelings about this, are not unique. Surveys show one of the things people living with cancer find unhelpful is people asking, ‘How are you?’.
One of the reasons I set up the blog, is so I didn’t have to say the same thing, give the same update, say the same answer to the question ‘How are you?’ to everyone who was kind enough to whatsapp, call, message, facebook, email. I hoped people might head to the blog, get a feel for how I was doing and leave a short comment if they wanted to. In that way, they would let me know what they thought of the blog or let me know they were thinking of me.
This wasn’t fair. It wasn’t fair on you. My hope, expectation, request doesn’t reflect human nature. Everyone has different ways they prefer to do things, different ways of communicating, connecting, showing love, showing kindness. It’s natural to do things your way. It is also fine for me to try and figure out, how, I can make that work for me too.
Friends, family, strangers, clinicians, all say the ‘wrong’ thing, quite often. You don’t mean to. Most of the time I’m convinced people are well intentioned or at the very least trying to manage their discomfort in the best way they can in the moment. I also know, I have done the very same thing; been well intentioned but said something to someone or offered unsolicited advice that they may have found unhelpful, inappropriate or ignorant. When it has happened to me in the past, such as during an IVF journey, it used to make me angry. Now I’m living with Myeloma, when people say the wrong thing, anger is only one reaction amongst a range of reactions, and the whole communication situation – well, it’s weird.
Sometimes it is easy to let comments, questions and advice go. Other times, most times, communication is fraught. I want to scream; ‘not every cancer is the same’, ‘no one person’s treatment and side effects and best decisions for them are the same’, ‘No, I’m still doing chemo’, ‘ I don’t want to give you a low down on my treatment cycle in the middle of the street or maybe ever’, ‘Read my blog!’. Please don’t tell me about the person you know who has the same cancer as me and who is ‘still going after 20 years’ (I’ve been told by the people who know, clinicians and studies, that I have considerably fewer years left in my life so how is hearing that, going to help me? And my diagnosis came at stage two, was the person you are speaking about diagnosed at stage 1 or pre-stage 1, with smouldering Myeloma? How is that like me? Oh, you don’t know? Then how do you know it is even remotely relevant or interesting to me?
Please ‘don’t tell me you were speaking to a friend and their cousin has Myeloma and you can get me their number if I want’, In fact, please don’t even hint you’ve been talking about me with someone else (because that feels creepy) even though, I get this too, is a natural thing to do….and unless we are in the middle of a discussion and are talking about nutrition and supplements, or even then, please don’t suggest the next fad in ‘cancer cures’ (I’ve done my due diligence and made my choices).
Please don’t say, ‘it’s not your time’. As much as I’d like to believe it too, hearing it makes me feel very strange. On one hand, I want to agree and step into that idea, after all I have already said previously, I was sitting with the idea that my specific Cancer would become a chronic illness rather than terminal in my life time. On the other hand, I get washed with anger and want to say ‘wake up’, ‘get real’, ‘if you can’t accept it, how do you think I feel? How do you think I’ll ever accept it?’ Or ‘I’m accepting it, why can’t you?’
I just wonder what it would be like if a good friend instead said to me, ‘sh@t, x years, that’s a real nasty one, do you fancy talking through how you going to spend those years? What the years will involve treatment wise, how much time that will take up (that you know about now) and what you might want to do when you are not at hospital or having treatment? Do you want some help to work that out? and…’I know you might not know right now or have the energy to think about it but please when you can, say how I can help make the years the best they can be’. This would be helpful, I think. I won’t know until it happens. What I do know is that the conversations I have had, along these lines, with these questions, felt; useful, helpful, hopeful and realistic. Thank you.
I read this back and I fear I sound petty. Does it? The feelings are real, I can’t stop them. Like thoughts, they just show up. What do I do with them? For a short time, I felt less conflicted, less weird, when I realised my feelings are experienced by other people with cancer. Macmillan is working on a media project which will look at the social experiences of people affected by cancer and recently asked, ‘What they are tired of hearing about cancer?’ A flood of responses poured in and were so achingly honest. I was surprised at how many people felt like I did and how many also felt conflicted by their feelings. My heart poured out for them because I ‘got it’; then I remembered I was one of them. My heart pours out for me too….and then it retreats, curls up in a corner, getting ready for whatever comes next.
I’m going to say it again, in case you have forgotten: I love that some of you are taking an interest in Myeloma and taking the time to find out more about it. I don’t expect everyone to do that. I am so grateful for the good intention when people say things or get me a number or offer advice. I am grateful for people wanting me to feel there is hope, that there are things out there that may help me feel better, wanting me to hear of others’ good fortune and hope that I experience the same. I am grateful. However, my gratitude seems to get overshadowed by other experiences; anger, irritation, desperation for quiet, peace, no demands, no messages that require an answer and these are followed by guilt, confusion, being scared. I don’t know what to ask of you, regarding communication. I know my need might change day to day and what is unhelpful in one moment, might be what I crave the next week. I’m scared to feel alone; I risk pushing you away by writing this post.
About me or about you?
Life has been so socially busy since my diagnosis, I have had to laugh. Why wasn’t I going out, meeting up, going away on breaks with friends as much before all of this happened? Why now? Is it because I want to ‘pack in time’ with the great people in my life? ‘Grab it while I can’ and in case, I become so ill that I can’t see my friends? Well yes, that’s part of it though only a small part as I’m not initiating many of the social arrangements at this stage. Do people need a fix of me? Surely not; I’m not that interesting! (I’m not fishing for a compliment here). Do they need to check and see for themselves that I really am OK right now? Do they simply want to show they are there for me? Or do they want to check in with Si, see that he is doing OK, for themselves, and because I asked them to, in the beginning, when all this crazy cancer-ness began.
Or…is the contact all about you? Is it you, the gorgeously caring soul who wants to do the right thing? Or be seen to do the right thing? Or to do, what you think you might like done, if roles were reversed, if you had cancer?. Being vulnerable again and at the risk of losing you, I am going to say that sometimes it feels demanding; “When can we next meet up?”; “Do you want to go away for the weekend?”; “Do you want to go abroad with us?”; “What can I make you?”; “Can I get you something?” Yes, I do want to go abroad, but I can’t fly right now; Yes, I do want to meet up though I have seen you twice in the last month and I need to see others too. I have smaller windows of non-hospital, non-chemo recovery time and less energy than I used to have right now. When I do have time and energy, I want to see all my good friends and family. If I see you, you my good friend, again, who do I not see, and when do I rest?
Or is it conflicting and demanding for me, because I never want to say ‘No’? In case next month, I’m not well enough to be social. I say ‘Yes’ and then get irritated that I can’t find time to rest. In an earlier post, I recommended being social while you can, as connection is good for the soul. I may need to revise this recommendation as not all socialising is helpful, inspiring or a good thing: sometimes choosing rest, quiet, alone time is important too. Also, I don’t want to miss out on experiences, so if you suggest a meet up (in the UK) to go and do something new or go somewhere new to do something fun, then I would love to say ‘Yes’. Rather than demanding, right now those suggestions seem to land differently; they feel nourishing, a chance to maximise quality of life.
What is helpful?
What is helpful communication wise? I’m not exactly sure yet. I think being in touch (please don’t stop being in touch!) but let me know how YOU are doing…rather than asking about me. I am having to focus so much on myself right now, my health, my hospital appointments, my food intake, water intake, my mental health, on an hour to hour basis, that it is so so so lovely to hear YOUR news, even a snippet, an up, a down, both or simply letting me know a ‘is what it is’ in your life, is great.
So…here’s another question / dilemma that has been whizzing around in my head, ‘ What level of selfishness is acceptable in a person living with cancer?’. Is it a different level for those living without cancer, major illness, other major challenge? How much selfishness is the right amount? How selfish am I allowed to be? What is my selfishness allowed to look like? Is it selfish, to want a fair amount of space, alone time, no sadness from others, people to be decisive and direct, to not have my time wasted (remember, its short and precious)?
Is it selfish to not answer messages that have questions in them, any question, and particularly ‘how are you?’ because it feels like a demand, something someone needs from me. Is this whole post selfish? Am I a selfish person? Have I always been selfish? Is selfish different from self-focussed? Is it ok for me to be self-focussed right now? What is that allowed to look like? What is acceptable? Should I care? Yes. I’d stop being me, if I stopped caring what impact I was having on others. Whizzing around……
There are helpful psychology theories and practices that I can apply to help myself with this. I’m not ready to do that right now. Readiness is crucial in psychology. Seeking help is often a first sign of readiness, though even then, someone can still need time to become ready to explore difficult feelings or be willing to make changes in line with their goals. I haven’t sought help from myself yet. As I consider it now, briefly, two main ideas cross my mind; compassion for me – my feelings are normal and valid and, no-one can ‘make’ me feel a certain way. When I hear something unhelpful, I may react with a range of feeling and thoughts. I still have control; I can still choose what I focus on, choose my lasting reaction and choose how my day is impacted by what I hear. More about this in another post. I’m still ‘in the experience’ right now and not quite ready to seek help.
I’m strong and I’m not.
I’m working out what is helpful and unhelpful. I don’t expect you to know. Its ok to ask.
I need space. I still need you.
I’m scared how you will feel when you read this post but I can’t control your feelings and how you choose to react; they’re your feelings, your choices.
I do hope you choose to stay in touch.
Resources that might help you to know what people with cancer find helpful and unhelpful
Si, A, S and J who encourage me to be me every step of the way.
Image (sleeping me): B
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.