I thought we’d killed them! In fact I had thought they were already dead well before the winter arrived. We looked for them so many times only to be disappointed when we couldn’t see them. I presumed the birds or next door’s cat had made them into a feast. We had stopped feeding them, stopped ensuring the water was clean and had not given them a second thought when the pond froze over.
Yet, here they are. Alive and kicking! More accurately, alive and swimming! And eating! Our fabulous fish, still zooming around in our horse trough from the 1800s; Seville (very orange), Beirut (grey white patches with orange head), and two whose names I can’t even remember! What’s more there’s an extra bod! It seems the fish got the memo about the Covid lockdown and decided to get busy! Now, I need to find a new name for our new addition and rack my brain for the other names. Where on earth were they hiding on all of those occasions we looked for them?
Blue Sky London Day
I am going to add an interpretation to this event in my mind. A helpful, healthy interpretation. We can do that, we humans. Our minds do it all the time. We often add a narrative, meaning or attribution to an event that is negative, unhelpful and unhealthy. When we do, pain and suffering soon follow.
Alternatively, we can also add helpful, wonderful, healthy, inspiring, enjoyable narratives to events, circumstances, thoughts, feelings and sensations. These can help us feel and create pleasure, celebration and hope. I have decided the discovery of Seville, Beirut, Unknowns 1 and 2 and the new boy (maybe it is, maybe it isn’t) are a wonderful symbol of resilience, energy and thriving in a constantly changing environment and when faced with never ending challenges. My darling fish, you are one of my sources of inspiration for 2021.
I too, am resilient, can find energy, thrive and feel alive no matter what challenges me and changes around me. This doesn’t mean I will feel ‘up’ every moment of every day. It doesn’t mean I won’t have the odd tough, emotional, low week. It does mean that I can cope and I have hope. Today, is a beautiful sunny blue sky London day, the fish are alive and I have had some great news about my body.
Undulating caterpillar inching forward to new heights
Long tough road
The horrid month
It has been seven months since I wrote last. Seven months since I came out from under the horrid month in hospital which almost broke me; the month where I had a stem cell transplant, a blood clot in my arm, a dangerous e-coli infection, went bald and could not be supported by an in-person visit from hubby. That was the hardest part.
Seven months since I got home from that experience only to be hit by a c-diff infection. The time has gone so quickly and seems like a life time ago yet also feels like yesterday, raw, significant, a milestone, an awakening. Covid, lockdown, fatigue, pain, overwhelm, slowness, feeling good then feeling shattered, taking on too much then letting somethings go.
The last part of 2020 was a health roller coaster, though mostly without the sharp heights. Instead it’s been more like an undulating caterpillar of three steps forward, two steps back, experiencing loss and frustration about not being able to do as much, or do things now in the way that I used to be able to do them (and may never be able to again) before embracing acceptance and commitment. In recent months I have finally focussed on what I can do, in the way I can do things, and consequently felt healthier, happier and positive about moving in the right direction.
I finally learned that slow can be good. Really learned it. Fully experienced it instead of deep down thinking it doesn’t really apply to me, only to others. I’ve let go of ‘not being good enough’; put a stop to ‘I need to be hard on myself otherwise I won’t perform well, succeed, be respected, be ok, be enough’. I reminded myself of my catch phrase for last year ‘consistency’ and how the long game even if played slowly, gently, is a good, healthy, empowering game to play.
Another of life’s games has been restored: work. I love it. I love being the clinical psychologist I worked so hard to be. I love making an authentic positive difference to other people, helping them learn about themselves, find their answers, try out their new skills, manage their mental health and become their own mental health coach. I love helping people identify what matters most to them, know their values, embody their values daily and use their values to guide their decisions, make and deepen connections, grow and feel whole. Even writing this paragraph feels inspiring.
Skin reaction to UTI infection – immune system out of kilter
Yet another infection
Yes it’s been tough and it continues to be tough. My immune system has needed constant boosts of growth injections to help it stand on its own two feet. Some people with Myeloma recover steadily after their transplant, some are back to work and exercise within three months. I wasn’t. I couldn’t. My body simply couldn’t cope. It needed more time, more nurturing, more monitoring, more help. I needed more help and that’s OK.
Then, once again as I sat safely in the hands of my amazing medical team and began to improve in the early days of January 2021, WHAM, another infection. Another ‘we need to admit you to hospital’. Sigh. This was a bummer.
My mind began racing. I can’t do this again. I don’t want to be in hospital, without hubby, during covid, when the risk of coronavirus is high. I’ll fall apart if I have stay in hospital again…don’t make stupid mistakes, if the oncologist says you should be in hospital, you should go…I don’t want to, it means another PICC line, another chance of a clot, more chances of infection, more chances of low mood and slower recovery. Please, please, please, let there be another way. Is the Universe giving me another test? Really? Don’t I deserve a break? My mind went to all the old negative unhelpful places.
Resigned and ready for hospital admission
Back to hospital
Eventually I came up for air, paused, took a breath and calmed my mind down. I nutted things out with hubby and made a plan. I negotiated with the medical team that I would medicate and monitor at home, have two weekly check-ups and admit myself if I got worse. Relieved I didn’t have to go in, I packed my bags just in case, cried and begged my body to get better. It didn’t. It got worse. Fever, weight loss, no appetite, no energy and high temperatures. Then arrival of a reactive inflammatory skin condition, joint pain, swollen ankles, knees and knuckles. Lovely.
Never by halves Janino. It wasn’t covid, when covid was all the rage and one I wouldn’t wish on anyone. This hiccup was all caused by a bloody annoying urinary tract infection (UTI) that most of us would send packing to the hills. Instead with my immunocompromised self, it stuck around, dug in and said ‘hey, you are not getting rid of me that easily’ and what’s more ‘I am going to wreak havoc all over your body’. I can almost hear the UTI saying, ‘Yeeha, playtime!’
I dressed in clothes to get straight into a hospital bed and reluctantly presented myself for admission at the Haematology Assessment Unit. Six hours later I was home. Yeah. Home. How cool was that!! The team had made another plan. They propped me up with some different medication, organised a dermatology and rheumatology consultation, and knowing how I felt about admission, had reviewed and decided I would recover better and be at less risk, at home. Here I was back in my safe place again. Relieved. Pleased. Begging my body to improve and begging the bugs to stop bringing my life to a screaming halt over and over again.
Birthday meal in Lockdown – delicious! Look at those curls!
Walking the talk: I asked for help
The UTI is gone, the skin flare has gone and I’m on a four week steroid cycle for the reactive arthritis that seems to have stemmed from my immune system going into overdrive trying to get rid of the nasties. I even have a full head of thick hair, albeit an inch all over and bouncy curls I’ve never had before. I’ll take it. The arthritis may be challenging, it’s hard to walk because of remaining swelling and pain in my ankles and knees. It’s virtually impossible to turn anything or pick up anything up with my left wrist but right now I’m feeling good. It’s been a good two weeks.
I’ve even re-learned that it is OK to ask for help; help to put my shoes on, cut up food, unscrew the top on a jar, get dressed, stand up, get to appointments, get in and out of a car. It pushed all my buttons about needing to be independent, not being a burden, and telling myself I just need to get on with it. I learned to ask for support and for asking and receiving support, to be ok.
Catching hubby laughing at me for trying to help myself and my being too stubborn to ask him for help did both annoy me and make me laugh; at myself and him. He knew that gently teasing me was exactly what I needed and often need to help me keep perspective. I can cope with this residual pain and swelling. It will pass. Something else will show up and I’ll deal with that too. In the meantime, the news from my clinic review today made today an even better day.
Hey body – I hope you know how loved you are
The good news
My immune system is BACK.
My neutrophils are now up over 5 after struggling to stay over 1. My body is generating lovely new cells and my platelets are now over 180. My paraprotein levels are stable coming in between 4 and 6 for the last three months. Whoop whoop!!
What’s more, I have tolerated my first Covid vaccine (Pfizer) well, with no side effects. I can now have all of my other childhood vaccinations re-done. My body is ready. Thank you, body! I knew you’d show up. Well most days I did. Occasionally I wondered if you were going to say it is too much hard work but here you are, showing up and stepping up. Thank you!
I am so so grateful because I love life. I still have a lot to do and more importantly, I still have a lot of person to BE. I can BE and do that now thanks to you, body. Once fully jabbed with all the renewed protection, I will be much safer out and about in the community again. The vaccination timing is looking good for alignment to when UK lockdown eases. Yippee.
I am now on six weekly monitoring instead of having to go up to hospital for one thing or another at least once per week. This is thrilling! This is normal life!!
Latest science about Metabolic Pathways in Multiple Myeloma
Cellular Metabolic Pathways in Multiple Myeloma
I am becoming super geeky about Myeloma and have begun reading loads of journal articles about the metabolic pathways, processes, genes and enzymes that cause, maintain and promote Myeloma relapse. I wasn’t ready for this level of biochemical detail before but now I seem to be able to absorb the info and am fascinated by it. The brain fog has lifted! In case you fancy a bit of geeky biochem cancer guff – check out this link
I am learning about how to shut down the pathways, fuel and microenvironment that Myeloma likes the best – predominantly glycolysis and glutaminolysis. This new in-depth knowledge feels empowering, gives me a sense of control, is already helping inform my decisions about further treatment and identify changes and renewed commitments to my preferred lifestyle choices. A new chapter is opening in my life, health and Myeloma journey. I am working on creating the best integrated health care plan that I can.
I am still being realistic. I haven’t forgotten the stats. I am still in my 5th year of a 7-10 year prognosis. For now, nothing is off the table; the traditional medical route, off-label drugs, supplements (specifically targeted to block pathways), Jane McLelland’s Metro Map and How to Starve Cancer approach, Chris Woollams Canceractive approach, meditation, exercise, oxygen therapy. I feel full of hope for thriving, for a high quality life, a long life and I feel good.
I am alive and kicking.
All there is to do now is to be and sit in this feeling, let it cover me like a cloak or envelope me like an exceptionally warm, comfy hoodie, which seems to be all I wear these days!
P.s. Tookie – while I do love you, keep your paws out of our pond!
Me and hubby
Rebecca Campbell – Goldfish; Erik Karitis – Caterpillar; Jon Tyson – Good news; Kristine Wook – Vaccine Teddy Bear; Brandi Ibrao – I hope you know how loved you are; Chewy – black and white cat
© 2021 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Blood Clots, C-diff, Covid, E.Coli, Fatigue, Glutaminolysis, Glycolysis, Metabolic Pathways, Pain, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Blood Cancer, Bone Cancer, Cancer, Crises and Stress, Fatigue, Immune, Immunosuppressed, Mental Health, Metabolic Pathways, Metabolism, Myeloma, Psychology, Stem Cell Transplant, Tumour Microenvironment
56 days since my stem cell transplant (SCT). I’ve now been home for the same amount of time that I was in hospital, 4 weeks. Hospital seems like a year ago. Life can be summed up by two words; SLOW and PATIENCE.
I’ve been slow before (when temporarily injured or after a knee op or three) but this is a new slow. Walking from room to room is slow, sitting down, getting up, slow. Asking muscles to work, their receipt and action of requests, slow. Stairs well, they may as well be Everest! All the yoga flexibility and strength pre transplant has evaporated. Turning on taps, opening containers, putting on shoes are all a huge challenge. Stretching is a mammoth task, let alone trying a forward bend or downward dog. I’m feeble, weak and extremely fatigued. Putting feet up after a shower, afternoon naps (usually two hours) and early nights are a daily must. Sitting down on the closed loo seat mid-way through brushing my teeth is novel yet frequently necessary; standing for two minutes in front of the basin is a tall order. The pace of my life has almost ground to a halt and my new norm is slow.
Stairs may as well be Everest
C-diff (Clostridium difficile)
I am so happy to be home. The night I was discharged I was ecstatic to be out. I’d recovered from the worst of e.coli, was on the road to recovery from SCT when WHAM. Another infection turned up and walloped me in the face. Well, more precisely it whacked me in the stomach and bowel, attaching me to the loo once again. At least it was my loo, with nice soft paper, a wide sink in which my hands actually could be washed without splashing the floor and my feet, with predictable hot water, familiar sprays with berry aroma and none of that hospital cleaning fluid smell. At home, even the loo was heaven. The nurse apologised for not being able to pronounce the intruding infection’s name. I laughed and reassured her it was fine. Unfortunately I could pronounce it all too well. The last word was Italian for difficult!! We agreed it was aptly named and settled on the more commonly used c-diff!
Slow slow slow. Taking it slowly and doing everything to prevent going back into hospital was the name of the game. I fended off the doctors for a week. I reassured them I’d be fine, reminded them that my temperature spikes were nowhere as bad as two weeks previously and that I could handle the infection at home if they just gave me a nice heavy duty antibiotic. Being readmitted would have taken the last bit of happy I had left in me and zap me of any remaining optimism about the transplant outcome. To the doctors’ credit they gave me their dubious looking faces but didn’t push it. They settled for giving me a three hour drip of fluids and the antibiotics. I didn’t realise how rough I looked, sitting in my own room in Haematology, having been assigned my own toilet in order to keep me away from everyone else and no doubt keep everyone else safe from me.
Home is only safe because hubby is here. His hidden talents and remarkable loving caring personality have come completely front and centre. I know I’ve said it before and I’m going to say it again, I am so grateful and extremely lucky to be loved in this way. My heart hurts for those going through SCTs without the support of a caring partner, friend or special loving family member (even when those people prefer space).
Hubby’s been doing all the cooking, washing and stuff around home with no input from me. I don’t do his amazing dinners (perfectly cooked fish with burnt butter caper sauce, delicious lamb with salsa verde or Persian aromatic salad) justice as my appetite has not fully returned and my taste buds are just weird. He gets up in the night (2am, 4-5am) to check I’m ok, to make sure I’m not stuck or being sick, to see if I’m wide awake (often at times the checks took place in hospital) or to see If I have fallen asleep on the sofa.
Our pond with gentle fountain – such a pleasure
He drives me to hospital, often twice in one day. He frequently waits for hours or goes away and comes back again like an on-call chauffeur so I’m not standing around for longer than I need to. Hubby has made sure the garden is immaculate and created a pond with a water feature because he knows I love the sound of running water. If chia seeds, baobab and pea protein are super foods then he is a super being (or bean, my new nickname for him)..sought of sung like superman except SUPERBEAN!
Hospital, new look for waiting
Waiting and self as benchmark
Waiting is the most predominant and draining feature of hospital now. I go twice a week for checks. It starts with an early morning (7.30am) blood test, a wait for results and then an occasionally short but usually long stint in the Haematology Supportive therapy clinic. Though from today I only have to go once a week (whoop whoop!). Other than the general stuff the results the med team are most interested in are my Neutrophils and Platelets and the question asked is, do I have any? The good news is that while my Neutrophils (immune system) have been roller coastering around between .69 and over 1, teasing me as they get towards 2 before falling back again, my platelets have been doing a fairly steady climb and are now at 123 (well out of the woods of the 30s when I would need to be given a blood transfusion). The rise in platelets mean my body is generating new cells. Lets hope they are clear of Myeloma. Once my Neutrophils get over 2 and start staying there, it means I will have some semblance of a rebooted immune system that might just be capable of having some childhood vaccinations and allowing me to be around more people.
The slow, the fatigue, the compromised sense of self, the need to avoid boom and bust, the extreme patience needed with myself about every little thing I try to do and decide not to try to do, is all normal for this point in the transplant recovery process. I tell myself to remember this and to not worry about what others that are post SCT have been able to achieve, start again or do before I have been able to. Instead I focus on using myself, yesterday or two hours ago as my benchmark. Have I been able to do anymore, any faster, any more normally than yesterday or this morning? Yes, great. No, great. It will get better. I will get stronger. My platelets and neutrophils are my friends and working on supporting me as soon as they can. Give them time.
I’m not good at waiting. Though I’m much better than I was before I was diagnosed. Hospital and appreciation of the NHS can do that because waiting is part and parcel of hospital life. I’m still rubbish at it. Last Thursday I waited 1.5 hours with only a 30 second conversation with a nurse letting me know they are waiting for the doctor. It’s understandable but frustrating as I see other patients’ doctors arrive, see them receive their treatment and leave before me, especially when their appointments were later than mine. Still I try to remember the overall amazing service I have received over the last 3 plus years. Some days it is hard though and I want to be angry, upset and cry. Unhelpful thoughts drift in; I booked this early appointment so I wouldn’t have to wait so long (again), this is wasting my life, it doesn’t take this long for blood results to come back or can’t you see from your board I’ve been waiting an age – do something!
My clinical psychologist side eventually kicks in and internally speaks to me – the person living with cancer, the Janine living with cancer treatment and its impact. Notice your thoughts and feelings, acknowledge them fully, connect with them (allow yourself to fully experience them, where and how they show up in your body, their nature, their depth, their source) and then once you have given this process time, engage. Engage with the present world around you (notice three things you can see, hear, smell right now, notice three things with yellow in them).
It’s ok to be angry, it’s ok to be upset and it’s very ok to cry. It’s also very ok to find your voice and ask the nurses again, what is happening and will the doctor come soon? Breathe, stay in this present moment, remember too who you want to be in the world, with others, with nurses, with doctors. I want to be kind, calm, clever and clear. Good, there is clarity in your values. It’s fine to say, calmly, to say gently to the nurse that you are upset. It’s ok to show tears. You can still be kind, still recognise the wait is not her fault, that she is doing her best. You can ask her to see if there is anything else that can be done.
Remember no matter which thoughts come into your mind, acknowledge and connect with them, engage with this moment, right now, moment by moment and then choose to place your attention on thoughts that are helpful, on actions that are supportive. If you are sitting in that hospital chair or waiting anywhere, choose to read, catch up on messages, listen to the radio, write a few notes for this blog, laugh, smile, marvel at your ability to shock yourself as you go past a mirror not recognising the person looking back at you (I so often forget I am bald and look like others’ common perceptions of a cancer patient). Do this rather than sit, feeding the anger and anxiety by watching nurses and other patients, dwelling, being hooked by, ruminating on the thoughts that are leaving you feeling angry and upset.
Hey self clin psych Janino, you are pretty handy at times. It was no coincidence that I met that side of you/me before being diagnosed and travelling life with cancer was it? Thanks for being there. Thanks for helping me apply strategies to lift myself from the fog, the negativity, the anger and sadness. Thanks for helping me notice the little things as well as the big things. I laughed when I discovered my trackie pants were on around the wrong way today. I was thrilled when a café gave me my favourite jacket, having kept it for me overnight after I walked away leaving it on a chair outside. Thank you.
Hubby, our 14 year wedding anniversary comes up this week. Thank you, from the bottom of my heart to the top, for everything you are, you do and for putting up with my slow.
Me & Hubby – headshots
Yogi Purnama – Superman
Michelle Henderson – Mr and Mrs
Macau Photo Agency – Waiting
Erik Nielsen – SLOW
Martin Jernberg – Everest
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in C-diff, Fatigue, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Cancer, Fatigue, Myeloma, Psychology, Recovery, Side effects, Stem Cell Transplant
Escape! I’m out of hospital. I burst into tears on leaving. Overwhelmed with a sense of freedom and loss. Loss of four weeks of my life and being in the world. Last night was my first night at home since June 27th. Twenty-six nights in one small poorly ventilated over heated room. Up until this experience I had never been in hospital for more than a few nights. Let’s hope I don’t end up back there which is common after a Stem Cell Transplant (SCT). Most people get an infection of some kind and have to go back in for a while. Afterall the immune system is still fairly non-existent. Though I think I’ve done my fair share of infection. E.Coli gripped me for at least two weeks of my four week stay. Not any old E.Coli either.
Specialist Nurse J came in yesterday. She asked me, do you know how sick you were? I said not really; I slept a lot and comparing my bad patch to awful gastro-enteritis which I have had a few times, in some ways it hadn’t seemed so bad. She set me straight, kindly.
She explained she had looked in on me a number of times but I had been asleep. This was a good thing because while most people have infection markers of 10 or below and doctors start getting worried and applying antibiotics, getting xrays, pet scans when infection markers are around 100, my infection marker registered over 400. My temp consistently spiked into 39s.
Nice. Once again I don’t do anything by halves. Trust me. I’m into full body experiences. Though thankfully I slept through a lot of this one! Instead of the Dr B predicted two week stay in hospital I was there 26 days and believe me once you feel well, hospital is not the place you want to be or at least definitely not cooped up in one room and one ward without being able to see the world.
Similar to e.coli
Two windows gave me moments of solace and a wee bit of interim escape. I could just see people playing basketball and tennis in Ruskin park through the tree canopy. Though the windows were in the sluice room which while spotless wasn’t a place I wanted to hang around much. Being reminded I may need to use a commode and other goodies at some stage in my hospital visit; if not now then next time wasn’t an image I needed in my mind. Being in there was handy one day; I grabbed a sick bowl for a moment of queasiness. Everything I needed right there, in the moment. Can’t ask for more than that.
The other HUGE thing that provided relief during this ordeal was all the fantastic facebook, insta, video, whatsapp messages I received. THANK YOU THANK YOU. Also for those I did manage to call for a few moments – thank you for being there, again and again. You are so so special, all of you.
The heavy duty chemo and return of my stem cells has appeared to go well and my neutrophils (basis of immune system) are on the rise. I did get mucositis (raw exposed soreness feeling in throat, mouth and oesophagus) which is common and I didn’t get it badly which I am thrilled about. My platelets are still a little low but heading in the right direction. Once I have hit the SCT + 100 day marker (October) I am due to have a bone marrow biopsy which is the deep breath moment. Will my bone marrow show any signs of Myeloma? Will it show a really low sign e.g. maybe a para protein (pp) of 1, similar or undetectable in my marrow? After all the cells that went back in were collected when my pp was 1. Or will it be higher? Will it come down? Questions, questions, patience needed. In the meantime I’m enjoying being home!
PICC Lines and Clots
PICC lines are good things and you can be unlucky with them. I’m a full not by halves person remember so with my first PICC line a clot arrived and ran up my arm above the PICC line towards my clavicle. If you saw the images on insta, you probably noticed my right arm and hand went an awful purple and swelled to about three times its size. After a week (I think I was a bit out of it) they took my PICC line out (nasty little buggers – they have a fish hook style on their ends so they grip once in (a good thing, nasty when they have to come out). At least the line itself comes out fairly quickly, easily, and reasonably pain free. Another PICC line was put into my left arm and normal intravenous meds resumed. The sub cutaneous line in my right leg (for the Haldol) was moved to my left arm also which made sleeping on my right side a whole lot easier.
With daily clexane (enoxaparin) injections again, the clot eased after a week and I recognised my hand, thank goodness. I was worried. One nurse /doctor (can’t remember now) had said clots can take three months to resolve. I’m still on the clexane but there are few visible signs of the clot now which is reassuring. Just bruises and quite a few of them. Hey, that’s completely manageable so I’m grateful.
A day in the life while in hospital
11pm – finally finish all the intravenous and sub cutaneous meds for the day. With two exceptions 1) haloperidol and something else in a slow driver which continues to provide anti-sickness properties through the night, and 2) TPN – essentially food and minerals delivered over 24 and 48 hour periods into my PICC line (because I wasn’t eating enough especially through the e.coli business. I couldn’t stomach the fortijuice and shakes that were on offer (pun intended!)
2am observations done – blood pressure, oxygenation level and temperature
Between 5am and 6am – more observations and then the intravenous drug regime and oral meds process began. Some meds couldn’t be dripped in at the same time so I would end up doing one hour of something then a flush of saline (or similar) for 10-15 minutes then 30 minutes of something else and then a flush and then two meds at once for an hour (all while the other two described above kept going in!
This would continue for the rest of the day; obs and meds pretty much until 11pm and the cycle would start again. Sleep at night was fleeting.
I showered on good days and confess to going four days without a proper wash! I can’t even imagine it, yick! When you are sick you are sick! I lived in Hubby’s boxer shorts and a singlet. I didn’t care who saw me pacing the ward (on good days) in these. Staff have seen worse and the get up was the coolest and most comfortable thing to wear. Hubby was an angel – delivering freshly laundered clothing, drinks, whims (shortbread) whenever I asked and that meant most days.
Each time I was woken up I’d need to drink, slowly make my way to the loo with Harry; my Med stand with four pump boxes on it to manage each drug and boy could he bleep. Then back again for the next wriggle up the bed in to a semi comfortable spot and before letting a very patient nurse begin the next hook up! Harry’s bleep would be every time an infusion was 5 minutes from finishing, then once finished, then whenever one of the pumps got it into its techie bits that there was a downstream occlusion i.e. there wasn’t but I may have moved my hand a fraction so it decided bleeping until it was checked was a cautious thing to do. In the end I got sick of buzzing for Nurses who had better things to do and would turn the bleeps off myself and restart the infusions when I was sure a pump was being over sensitive. Anything to stop the bloody beep!
Harry’s mate keeping an eye on me.
Hospital food is beige. I get they try and have a lot of people to accommodate. If you have no appetite and are trying to force yourself to eat; the menu is not a pleasant thing. I did however live on tuna and mayonnaise sandwiches when I was up to it and the kitchen staff were lovely.
Funnies and daft things people say to you
On my second to last day I took Harry to the loo as usual only to realise I wasn’t hooked up to him anymore. That was one image I could have saved him from!
You’ll be out before you know it (when I’d already been in 3.5 weeks). Actually I will know it. I’m willing it. Now I’m begging for it.
Oh I’m sorry. It will grow back quickly (referring to my hair and shaved head). Why are you sorry? I’m not sorry. I’m cool with it. I have more things to worry about than my hair!
Do you have kids? No??? It’s not too late. Oh yes it is!! Its ok my life can be complete without kids. Just because you have five and want more (pity your wife possibly?) doesn’t mean I need to have them.
By the way my responses stayed in my head and instead I would just smile.
First night at home
I’ve been awake since 4am, walked into the garden and around it about six times, felt the rain on my scalp and face. Read a fabulous big magazine (gift from a neighbour and the publisher). Check it out here:
I have revelled in cuddles, kisses, touches, smelling and touching hubby. Holding hands is so special when you haven’t been able to do it for four weeks.
Me & Hubby
Photo by CDC on Unsplash – ecoli style
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Blood Clots, E.Coli, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT, Symptoms and Side Effects Tagged with: Blood Clot, Bone Cancer, Cancer, Chemotherapy, e-Coli, Fatigue, Mucositis, Myeloma, Psychology, Treatment, Worry
You are a bit of bitch really aren’t you? Very clever. Coronavirus, Covid19 or whatever you are calling yourself, you’ve sent the world in to a tail spin. You’ve made it even harder for those with less and caused loss, grief, fear and stress to many. You’ve caused economic chaos just when the country’s debt was coming under control. Corona1, you have brought the best and the worst out in people. You’ve given the scientists, statos and health analysts a right royal challenge to get their teeth into. I hate you. I don’t want to die from Covid19, Cancer already has that sewn up. I’m cool with that. You on the other hand are ruining my precious life. Now bugger off.
Coronavirus Care Bear
Every week when I’ve gone to hospital for chemo, had my blood taken and received an injection, I’ve risked catching you! My body perceives such a high threat level that is on edge the whole time I am there. I am antsy when I have no choice but to walk down corridors where physical distancing is impossible. I wear double masks, I wash my hands constantly and in my mind you hover on every surface, everyone’s lips, everyone’s clothes. I cringe with every sneeze and cough heard. My body is so hypervigilant and tense that when I finally get out of the hospital I am thoroughly exhausted.
You, Corona, are a cruel cruel virus. I took time to focus on being as well as I could during my current cancer treatment and to foster as much calm as possible. Huh! Calm is very hard to come by most days thanks to you, let alone on hospital days when it is nigh on impossible to feel relaxed.
I was trying to get my head around you Corona and your ramifications, for my bubble of hubby and me, for my loved ones, when strangers suddenly became very scary entities. Minding my own business in a hospital corridor, a man walked towards me, looked me directly in the eye, shook his head seemingly disapprovingly and then, coughed. He coughed again, purposefully. He looked directly at my face, coughed a third time and then with his hands hurled his cough at me. I was shocked and almost stopped. He threw his head back, laughed, looked at me again and grinned. Then he carried on as if nothing had happened. So too did the person behind him.
It was over in seconds. My thoughts raced – is that it? Corona, does he know you have infected him? Did he want me to get sick? Why? What did I do? Isn’t having cancer enough? This happened the week before official lockdown here in the UK. If it was your idea of a practical joke Corona, you got me. I was worried for weeks, waiting to see if you had landed, were going to take my breath away, make me very very sick or you know, kill me.
Once in lockdown, this incident would be called assault. The man could be found, arrested and charged. I would report it. At the time I didn’t know this and it was the last thing on my mind. I was in shock, kept walking and found myself trying to work out what had just happened and why. I remember feeling and thinking that somehow he had taken offence to my looks or seeming wealth. I had my headphones on and was listening to a podcast, he looked dishevelled and possibly impoverished. Did he think me too wealthy, too fortunate? Well I am fortunate in so many ways however that doesn’t excuse his or anyone’s attempt to cause me harm.
On reflection Corona, I realised there could be a million reasons why he did what he did, none of which might match with my first interpretation. I would never know his rationale so there was no point me thinking about it anymore. Yet somehow, Corona you had made me a target, when I already was one, thanks to cancer. You forced me to think about a whole heap of virus stuff that I really didn’t have a lot of headspace for. Instead of hospital being safe, the place I go to heal, you have made it a very scary destination.
Thanks a bunch Corona.
No more adventuring
Maxed out vulnerability. People living with (or dying with, if its a bad day) Myeloma are in the seriously at risk group. If I followed the full UK guidelines to the letter, for people who need to shield, I wouldn’t be sleeping in the same room as my husband, spending time in the same room as him, cooking and eating with him. I would be alone in a bedroom, only allowed out for bathroom breaks and to use the kitchen separately. That wasn’t go to work. Not unless one of us got the virus or hubby had to go out of the house a lot. You almost stuffed up my home life Corona. You certainly stuffed up my adventuring (two cancelled trips that I was so looking forward to and that would have balanced out being on crappy treatment) . No, you were not going to get it all your own way.
Lockdown hasn’t been all bad. Consistency has been my main word, mantra, possibility, call it what you will. I committed to myself to choose somethings I would do while unable to go out and do them consistently. In fact, you gave me a renewed sense of purpose, a new start line. I checked in with myself, wrote a list of things I wanted to do and began chipping away, doing a little bit of one thing each day until it was complete before moving on to the next task. Thanks to being stuck at home with less outdoor distractions I’m feeling good about lots of little and not so little achievements. Cheers Corona.
Not us (obvs) but cool pic
My new morning routine makes me feel great. I re-established my intake of a litre of water with lemon juice, my herb drink and added in yoga. Hubby and I completed two 30 day yoga programmes and are part way through another with my favourite online teacher Adriene from Austin, Texas. (links at end). My downward dog is the bees knees. My hip flexors on the other hand….are getting there. I’m loving it.
For the first two months I cycled on an indoor bike at least once a week, paced the length of the garden until I got dizzy or had listened to hours of a podcast and worked out with weights. I felt stronger and healthier than I had in an age. I finally submitted two research papers to journals for peer review (core topics: dementia, family involvement, interventions). Another paper I was involved with, was published. Manual client notes from work completed prior to using a record system are now online. My continuing professional development log is up to date. It even contains new entries from the multiple courses I’ve down during lockdown. I’ve enjoyed growing my Acceptance and Commitment Therapy (ACT) skills.
I baked gluten free, natural sugar only, snacks and slices that all turned out to be edible (by me at least). I cooked loads and cleaned like I had never cleaned before. Well that’s not true (some of the end of tenancy flat cleaning days were mammoth) but I cleaned more thoroughly than I had in an age.
Silver Rooster Easter Bonnet
I’ve kept in touch with loads of friends. Had virtual drinks and dinners, coffee catch ups and laughs (especially over the Easter bonnet competition which included a plane and a silver rooster, no less). Had friends drop off yummy treats and delicious fresh fish. Clapped for the NHS and frontline workers. Formed deeper connections with my neighbours through whatsapp about shopping, helping out, puppies, compost, birthdays and more. Learned about tiktok, seen some things about Trump and some other dodgy characters that I never want to see again! Corona you have forced a new world upon me and I will remember the bright spots. Even though….
low day(s) duvet day(s)
You almost got me. My mental health took a hit. I made it to about day 50 when cabin fever hit. Half way through the worst 24 hrs Corona, I discovered my knickers were on inside out. I didn’t care but it did sum up the day.
You are scary but I was over being home. I was desperate to go for a long walk. My right hip was giving me grief and I knew walking would help. In early March, my hip decided to drop and rotate forward (it’s done this before). Joy of joys. You didn’t care Corona. You had your own schedule. Before I could book a physio appointment to feel the relief of alignment you made everyone stop work and close doors. No face to face let alone hands on work was allowed. My body hated you.
My hip got steadily worse. The pain was constant, worse when I sat down or lay on that side. I felt like one of those bobbing dog toys hanging from a car driver’s mirror; up, down, side to side, up down, side to side. I’m surprised hubby didn’t slip me something in a cup of coffee so I just stayed still for a few hours.2
Joyden Woods Walk
Dr B gave me permission to leave the house!! As long as I avoided everyone. He wanted my mental health to be ship shape because the next step of treatment is a tough one. I woke up early. There was no one about. I put my masks on and walked. Walked for an hour. I breathed deeply. It felt so so good. Ha Corona. Take that!
Despite you, the pain in my hip is now improved and I’ve completed another seven months of chemo.3 OK my consistency has gone to pot over the last two weeks but part of me loves that; I’m human after all and needed to rest my painful hands and wrists. Even so Corona, your attempt to disrupt my treatment, health, heart and hope has been futile; I’m ready for the stem cell transplant (SCT).
It does look like I’m going to have to do the SCT alone. Without face to face visits from hubby or friends to make me laugh and just be with me. Corona, you had to have the last word didn’t you? You really are a bitch.
1 I can’t get the chorus from My Sharona (The Knack) out of head so Corona, my nick name for Coronavirus/Covid19 stuck, sorry.
2 Not a joking matter I know.
3 A quick update on this to come in another blog
Great yoga sessions and teacher:
Sarah Kilian – Bear with Mask
Robin Benzrihem – maskonground
Robert Collins – man_woman_dance shape
Mika Baumeister – thinkingmask
Jurien Huggins – duvet
Ashkan Forouzani -stayhome
Anastasiia Chepinska – ClosedCovid
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Covid Tagged with: Cancer, Coronavirus, Covid, Covid19, Lockdown, Mental Health, Virus, Yoga
I listened to an interview with best-selling author Marion Keyes today and she talked about writing emotional landscapes. This is a wonderful phrase; it captures the many random thoughts I have about life, being human, living with cancer, with chemo, with uncertainty. Random thoughts, the theme for this blog, a collection of moments from the last two months where thoughts appeared in my mind as I sat, walked, waited, tossed, turned, fumed, cried, ached, appreciated, smiled, laughed and loved, always loved.
House music is on my mind and in my ears…though the Brighton weekend for clubbing was a bust – great weekend – we just didn’t find a stylish club with fab house music. Our guys went ahead to do reconnaissance. They didn’t even make it inside one club. A group of people came out (not fast enough according to them) saying very loudly how sh*t the club was, dark, dingy, crap music…needless to say we abandoned that idea. Fab friends made up for clubbing disappointments. After all, we are fortunate enough to live in one of the best club cities in the world so maybe we’ll stay local next time!
The chemo regime called VTD is different this time, cannulation monthly only – yippee! The weekly injection of Velcade isn’t so bad. I take one dose of anti-nausea beforehand and haven’t needed anymore anti-nausea drugs afterwards so far. I end up with a little localised bruising. The drug kicks in fully after about 36 hours…funny sensations, aches, pains (all bearable) in my bones…I visualise Myeloma shrivelling and dissolving.
The Thalidomide seems to impact my quality of life a lot more than the Velcade. Yes that Thalidomide, the one that causes horrible side effects for foetuses. It is no longer given to pregnant women but was discovered to have a positive impact on cancer, see here), The daily 80mg dose knocks me out and I feel tired ALL THE TIME. The stuff is toxic. A nurse who first administered the pills to me was gloved up and handling it like it was a hot potato, doing their best to avoid all contact with the pills. I wondered what the hell I was about to put into my body!
Even the weekly steroid doesn’t combat the lethargy (but it has made me eat more and I’ve put on 7kg that I don’t want!). Early morning energy is now a distant memory. The other unwanted side effect of is my stomach is like a horizontal crackerjack. I take Thalidomide and out my stomach comes, tight and large, making me look like I have consumed a whole loaf of gluten filled bread or more ironically, I look pregnant. On top of the VTD chemo regime I inject nightly Clexane, a blood thinner to stop the Thalidomide from causing blood clots.
Oh the layers…take this because it helps this but then take that because to take the first thing you need that thing to stop the bad things of the first thing….and round and round it goes….Still, the regime is working and the presence of Myeloma in my blood and bone is dropping again, down from 17 to 11. Hopefully it will continue to fall.
Doesn’t it seem an age since Christmas already? I nicked named last Christmas, Creepy Chrimbo because the hospital was strange and very different from usual. My chemo didn’t stop just because it was Christmas eve or New Year’s eve. I am grateful for all of the hardworking nurses who managed to fit in everyone’s treatment to a short week so Christmas Day could be the best it could be.
Hospital halls were eerily empty and I could hear every footstep I made ringing in my ears. I felt like I was in an Alfred Hitchcock thriller or that Jack Nicholson’s horror film grin would appear around a door jamb any second. The sense of being alone was made worse because the Chemo Unit is down the end of a long corridor, I often feel like it’s ‘shoved away’ with the renal unit, out of the way because somehow we are toxic and ‘they’ don’t want us near others, the healthier people, in case we contaminate them somehow. I know this is silly but then maybe not? Chemo is after all, hazardous, noxious and needs careful handling so maybe it is purposeful that our unit is past the research centre and beyond the other wards. I know it isn’t helpful to think this way, a little negatively, like we are not really wanted and are merely being put up with somehow. The NHS staff certainly don’t perpetuate this story; they are friendly and welcoming.
Just before I was alone in the long corridor I noticed a woman on a hospital bed being wheeled towards the renal unit. I try not to look at people when they are being wheeled around in public view, I often think it is fairly undignified yet obviously a necessary event in hospitals. I wouldn’t want to make eye contact with anyone if it was me on that bed. I’ve noticed some patients close their eyes, put a pillow or blanket over their face – possibly to gain some privacy in a very public space so I try to offer it by glancing away quickly. Though if someone in a bed looked directly at me I have decided to smile and hope they find it reaffirming, reassuring, and non-judgemental somehow.
This woman was on her side, looking away. It was after 5pm on the 24th and I wondered what her Christmas would be like and what her story was. Would she be sad to be in hospital over Christmas Day? Did she have family who wished she was with them? Would they visit her? Did she want them to visit? Or was she secretly relieved she had the best excuse to not ‘do’ Christmas this year, to rest and focus on herself instead. Or maybe she didn’t celebrate Christmas at all and instead would be disappointed to be missing out on holidays. These thoughts vanished as I found myself alone in a grey corridor with white walls, in silence where there was usually the hustle and bustle of nurses, doctors, patients and public, trolleys and endless supply boxes.
The silence strangely continued outside where the usually busy main street was devoid of cars and people. This reminded me of the contrasts of Christmas, wonderful, fun, exciting for some and challenging, triggering, or lonely for others.
The new buzzword popping up everywhere is Repurposed. From transforming old furniture into something new or turning one person’s rubbish into another person’s useful item, and now, the latest thing is repurposed drugs. Essentially, using drugs already approved by the medication regulators for treating non-cancer illnesses, to treat cancer or be added to existing cancer treatments to increase effectiveness.
When I first came across this I thought it was yet another cancer fad because the headlines gaining traction were about repurposing dog wormer! Yes you read correctly. Cancer patients were shouting out about how an anti-parasitic drug called Fenbendazole usually used for deworming dogs had cured their cancer! I was very dismissive. I don’t want to miss out on something that works but I don’t want to get caught up, distracted, invest time and precious energy into the cancer equivalent of the latest diet or beauty treatment. Dog dewormer seemed to be more in the fad than the credible category and on par with ‘take turmeric’ and your cancer will vanish. While I am a big fan of turmeric and curcumin and take it daily, I do not believe for one second that it (or Fenbendazole for that matter) will single-handedly cure my cancer or cure anyone’s cancer.
But then I got thinking, had I been too quick to write off this idea? Medical discoveries come in many forms, (like the Thalidomide scandal) from unlikely places so why wouldn’t it make sense that a medication that addressed one illness, whether in animals or humans, might also be found to have anticancer effects? I took another look and found this. Click Here
I googled some more (as you do) and came across some other interesting stuff…
Trials and projects involving existing non-cancer drugs are now being investigated for their effects on cancer – these are so important because if found to be effective they are likely to be approved for cancer treatment quickly, be cheaper and more widely accessible as they are already approved for human use and side effects are known. These links explain more..
Imagine living with cancer, walking in to a clinic, having your DNA and genome sequenced by a friendly lab technician and walking out knowing a specialist will create a cancer killing virus tailored just for you and your cancer. This is another exciting development that doesn’t seem too far away now…it’s not science fiction! Check out Andrew Hessel, founder of Humane Genomics, he explains how tailor-made viruses may one day cure cancer.
I wonder how I will be repurposed…will I be fertiliser for a beautiful oak? Will I return as a stretchy, wiley happy cat? A roll of loo paper (someone’s revenge though at least it’s useful)? Or a spider, imagine eight eyes to people watch with….
I’m due an upgrade on my phone. Chatting with my wonderful friend and hairdresser K, we laughed about our mobile phone providers and how I could easily be expected to sign up to a new contract that would out last me! Humour and especially dark humour is an emotional landscape I find really helpful.
It is a high blue sky, crisp cold and sunny day in London today. This emotional landscape is beautiful and I found myself smiling, A LOT.
Woman in the woods – Andrew Neel on Unsplash
DJ – Jernej Graj on Unsplash
Dog Wormer picture (care of The Sun)
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Myeloma Treatment, Results Tagged with: Bone Cancer, Cancer, Christmas, Dexamethazone, Dog Wormer, Drugs, Fenbendazole, House Music, Myeloma, Repurposed, Steroid, Thalidomide, Velcade
When I left you last, Mum was in recovery from breast cancer and Dad’s melanoma was kicking him in the groin (literally). They are amazing people, and fortunately for me they coped and are coping incredibly well with the challenges. Apparently this wasn’t enough to contend with, a trifecta was called for though I thought we had already achieved that. Not to be upstaged, my cancer leapt out of hibernation. My dreaded paraprotein levels (42 at their worst, down to 1 after treatment) are now at 17.
It was gutting to see the Myeloma active again after such a short time. I was again hit by how I wasn’t ‘special’. I wasn’t going to be the person who is miraculously cured by the new cutting edge treatment. I wasn’t going to be one of the statistics up the right (and right) end of the bell curve. I was firmly in the middle of the pack. My body had responded very well to treatment but I was one of the many people who experience the peripheral neuropathy side effect and have their myeloma become active again within 6 months after first treatment. I was well and truly on the path to being the ‘typical’ (albeit younger than usual) Myeloma patient with an 8-10 year life expectancy after diagnosis. I’m almost three years in now…well, you can do the maths.
Tests, tests and more tests
The big upside of being on care as usual and watch and wait, is that over the last six to nine months I haven’t had to go to hospital every week, its mostly been monthly. Except that while my schedule was clearer, I had time to pack in everything that had been on hold while cancer took pride of place. More tests, x-rays, MRIs; I felt like an old hand, navigating the hospital walkways, waiting rooms and procedures with robotic familiarity. The increasingly unbearable pain in my hands, arms and ankles was not Rheumatoid Arthritis after all but more likely the bloody Myeloma.
A rotator cuff injury in my left shoulder (to go with the benign lesion that was already there, maybe it was lonely?) needs physiotherapy. It’s about nine months since the referral, no sign of an appointment yet. I have had a letter asking, do I still want an appointment?. Yes I bloody well do thanks! Well in that case, don’t contact us we’ll contact you, was the reply. Note to Health Secretary (It’s not Jeremy Hunt these days is it, hope not, though sadly I don’t know who it is and if they are any better, could they be worse? That thought is scary!!). Anyway back to the note – Dear Health Secretary, please get the physio department more resources, they are swamped! Hmmm.. not much time off hospital after all.
Treatment two in the sequence for prolonging life after diagnosis with Myeloma
My next round of treatment was due to start when my paraproteins were up to about 30 (or if they started increasing rapidly). Mine had been rising steadily in 1-2 points a month. A January 2020 start back at hospital seemed a reasonable prediction and hubby and I had talked of getting away for a, never before done together three month trip, prior to the treatment shackles going back on. When Dr B said we need to start treatment ASAP, I’m worried about your back. I said no you don’t, we’re out of here. I’ve been dying to go to the middle east so as I’m dying, I’m going!
What I really said was, boo I had hoped it would be January not October, can I put chemo off for a while? He asked if I felt well enough to travel. Of course I said yes. I really do wonder what I would have said if I hadn’t felt well enough. I suspect I would have lied, said yes anyway.
Patient choice and positivity
I was going to test the concept of ‘patient choice’, there is such a thing isn’t there? Nothing was going to stop me getting away with hubby. We both needed a break and this rare chance where we had time off work/hospital at the same time was not going to be missed. I asked what I could do to prepare for the next round of chemo. Dr B said the best thing was to stay positive.
Ha, all the more reason for me to travel before starting treatment then. Being my ‘adventurer self’, experiencing new places, cultures, food, wine with the love of my life, IS what nourishes my soul and makes me feel positive! We negotiated with Dr B for chemotherapy to start in six weeks; not the three months I’d hoped for but brilliant all the same. A strange mix of worry (about treatment) and euphoria surged through my body. I noticed a feeling and realised it was excitement! I hadn’t felt that in ages. Walking home from clinic, visions of Israel, Lebanon and Jordan flooded my mind. I went straight in and booked flights.
I’m back now from an amazing trip. I feel ready. Really ready for the next phase of this Myeloma madness. I even feel hopeful (albeit on top of my usual layer of pragmatism) that I could still be a wee bit special. I could still get that fantastic recovery that may not be likely but is POSSIBLE.
Month one of the new treatment regime. Hit me with it Doc. I can take it. I’ve just knocked three more countries off my bucket list (big grin).
Images: Various places in Israel – Hubby or Me
© 2019 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Cancer in my family, Myeloma Treatment, peripheral neuropathy, Psychology for Cancer Tagged with: Blood Cancer, Bone Cancer, Cancer, Dying, Family, Myeloma, Para Protein, Patient choice, Positivity, Psychology, Travel, Treatment
Peripheral neuropathy. A fancy pants way of saying pins and needles. Except it is a bit more than that and the more, is scary. When tingling on the soles of my feet and in my hands turned to prickles and cried out for attention, I had just started my 14th cycle of chemo. At night, as if hedgehogs at a rave, the prickles began dancing around, keeping me awake. My self congratulation for having coped well so far and immense gratitude to my body now seemed a little premature or at least to have jinxed me. A strange oscillation between numbness and pain set in. At first, it came and went so I wasn’t too worried. I kept up the once a week, Maintenance Chemo.
The pain got worse. The tingling turned to a sharp micro needle feeling and the ache crawled up my left arm. I remember thinking, this isn’t good. I started talking to hubby about wondering whether the benefits of chemo still outweighed the side effects. We decided they did. I kept going.
So, did the sensation and the pain. The cannula insertion became excruciating. The drip of the drug into my forearm was ok but by the end of the treatment the whole arm throbbed; I hadn’t had that before. In the days in between chemo, the pain, numbness and needling rollercoaster, deepened and didn’t let up. I felt increasingly fatigued, distracted and unable to concentrate. Pain will do that. The symptoms eased a little if I did nothing and stopped using my hands altogether. Have you tried that? It is nigh on impossible! My weekends became slow, sedentary, dull; low mood came a calling.
Peripheral neuropathy doesn’t like hands
Then it hit me; the way I hold a pen had changed. The length of time I could hold a hairdryer and the way I used a hair brush had changed. Whenever a cap needed to come off a bottle, I now ask for help. I was using two hands to open doors or press flush buttons on toilets. Cooking had virtually stopped (and I had thought I was being lazy) instead lifting chopping boards, holding pans, taking roasting dishes out of the oven were difficult. I no longer enjoyed being in the kitchen. No wonder I’d started avoiding it. Hubby rattled off a list of other things I’d stopped doing or was doing differently.
I felt exhausted just thinking about it. Should I stop treatment? Should I keep going? Would I lose the use of my hands if I continued with chemo? What would life be like if I couldn’t use my hands? If the pain was too much? Was I being a wimp? I’m on a clinical trial, I signed the forms, I committed to it; could I simply stop? What would happen to me if I did stop? Would my cancer flare? Was chemo worth it? Was chemo making things worse? How do I decide whether to continue something that may extend my life, when it seems to be significantly reducing, the quality of the life, I have left? My brain; the whizzing and often unhelpful thought production machine, joined the rave.
I told my oncologists what we had noticed about the difficulty using my hands and how I was questioning whether to stay on the trial; questioning whether more chemo was the best thing for me. They ran a few tests and determined I had lost strength in my hands, especially my left hand. They recommended I defer chemo for a week.
That week came and went with no improvement. I went into a holding pattern for another week. Peripheral neuropathy is the pits and as well as dancing needles it feels like being burnt, a searing. The pain was constant, in my shoulder, my forearm and using my hands made everything worse. More MRIs were ordered. I started to worry about new lesions. Was it peripheral neuropathy? Would it get worse? Was it something else?
Deal or no deal
It came down to one week and the limit of missed weeks allowed when on the trial. I had happily missed a few weeks of treatment to be with Mum during part of her radiotherapy and then missed additional weeks while we waited to see if the pain and hand function would improve. We now had to decide, the medical team, hubby and I, the best next step for the one remaining week; chemo or no chemo. Sounds like deal or no deal except there was no money involved, no windfall or good luck, instead hope or no hope. Bones versus hands.
Hands won. Living rather than life, won. This time. Drs L and A recommended I stop chemo; they didn’t want my hands to get worse and so I was kicked off the trial.
After 21 months, 17 cycles of chemo, virtually weekly blood withdrawal, 100 odd cannula insertions…it was time to give the body a break.
Care as Usual
I went off the trial and on to ‘care as usual’. What I didn’t factor in, was that meant I would no longer be looked after by the trial team, the team that had had my back from the beginning, the team I had come to know, feel safe with, could express my fears and questions to and laugh with. I would be losing the team that had been with me since March 2017 when I first stepped into the Chemo Day Unit and steeled myself for the uncertainty of cancer treatment. Sigh.
Then of course there were the dominos. The other life challenges, falling thick and fast. Not sure what I mean? See my last post, Silent Dominos.
So while still dealing with Mum’s recovery and ‘what next’ (she’s amazing by the way) and my peripheral neuropathy and hand malfunction… along came the next three dominos:
- Changing treatment, care team and feeling cast out into a new uncertain hospital process
- Dad’s Melanoma came back
- My cancer got worse
Who on earth had it in for my family? Who had we unintentionally, unwittingly, annoyed?
All of us with cancer. At the same time.
We didn’t deserve this. No one does. I needed to remind myself:
Cancer doesn’t care who you are or what you have or haven’t done. It’s simply not that choosy.
Posted in Cancer in my family, Chemotherapy for Myeloma, Myeloma Treatment, Pain, peripheral neuropathy, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, feet, hands, Myeloma, peripheral neuropathy, pins and needles, Side effects, Treatment
Hello you. Is anybody out there? Sorry I have been so silent for so long; it’s been a heck of a hard eight months. That’s not to say there haven’t been some good times, some great times, times I’ve felt adventurous, happy, even peaceful. There have though, been times when I’ve thought this is just too much. Too much everything. I may have been giving this blog the silent treatment, yet in my head, I have written so many, many, times.
If any one thing had happened, gone wrong, been challenging; I would have been able to cope. Life doesn’t work that way, though, does it? One thing happens, then another, and while I get my head around those, another and another, like multiple, side by side dominos tracks; they all cascade, one by one and at the same time – bang, bang, bang.
After about the third bang…my ability to do the helpful, healthy things went out of the window. I fell of the tracks… I struggled to get back on. For a week, I managed it, then I fell off again. I picked myself up, recommitted but only for a day … and then I …gave up.
Sugar, alcohol, copious amounts of coffee, long periods of not eating, then eating crap, withdrawal, duvet days, not wanting to socialise, wanting to be on the couch with TV and the cat…all re-entered my life with a vengeance. I was no longer walking the psychologist and cancer care talk.
Except I couldn’t escape the knowing. I knew what was happening. I watched it happen. I watched everything I’d built up to support me, over the previous year since diagnosis, slip away. Despite this, somehow, I was still managing to function, to help others, to turn up at the cancer centre and be the psychologist, I knew myself to be. The cost was high. Exhaustion kicked in. Overwhelm. Then the next domino fell, and the next and another.
So, I fell off the tracks and self-care plans. I stopped walking my talk. Out went the green smoothies and in came caffeine and Pisco sours. I was in cope, any way I could, mode.
Turns out I am very, very, human after all. Who knew?
And the dominos…Well, one you already know about, if you caught my last two blogs,
Isoflavones and Tears on a plane
The others were a shock to me, maybe to you too.
The first set;
1. My hands stopped working.
2. Mum got cancer.
3. An internet troll joined my party.
I’m not silent anymore.
Posted in Cancer in my family, Psychology for Cancer, Symptoms and Side Effects, Uncategorized Tagged with: Cancer, Family, Fatigue, Mother, Psychology, Side effects, Troll
Saying goodbye to anyone you love is tough. Saying goodbye to my parents is very very tough. It hits me differently every time.I’m not a call every day girl or live close by girl and never have been; maybe this is the downside of our family’s emphasis on resilience and independence? Anyway, it just worked out like that.
My parents aren’t call every day people either. I never know what I’d say, for one thing. I always knew I’d travel, then I landed overseas and didn’t come back, except for visits.
Childhood in one country, adulthood in another.
Saying goodbye is never easy. It’s even harder when life’s curve balls keep coming.
Cancer is part of our family and my parents are super brave. Now, we are all, the diagnosed, the treated or being treated and the monitored. We are all now carers of people living with cancer. For my liking, we are far too familiar with hospitals and their machinations. Being with Mum and Dad during a small part of Mum’s big C journey, seeing her handle it with courage and honesty has been a mix of scary, reassuring, and inspiring.
Strange, how living with cancer is both normal because it’s so common yet abnormal because it demands a new normal to be created…and ultimately accepted. A new normal for carers as well as patients. Treatment disrupts lifestyles either temporarily or forever more. Scans and check ups creep into lives like tax bills; always there in the diary, we know they are coming and we don’t really want to think about them or the possibility of having to pay more. Isn’t getting cancer in the first place, enough?
Worries, thoughts, about relapse or recurrence, hover around. They are set aside for short bursts of positivity and focus on the important things, before appearing like a politician, front and centre, even if there is nothing new to say.
Saying goodbye is never easy.
Though I wouldn’t mind, if it was GOODBYE CANCER.
Images: Unsplash pics:Plane window–morre-christophe-121633
© 2018 Janine Hayward www.psychingoutcancer.com
. All rights reserved.
Posted in Cancer in my family Tagged with: Breast Cancer, Cancer, Carer, Goodbye, Melanoma, Myeloma, New Normal
The Tor and sheep’s poo
The stone of the Glastonbury Tor holds the sun’s warmth and shares it with my back. I duck out of the wind, soak in the fabulous views of the Salisbury plains and reflect on the last year and half since diagnosis with Myeloma. Deep breaths of fresh air (fused with sheep poo aroma) fill my lungs. I’m sure the menopause (Meno) conundrum has been one of the most challenging and inspiring learning elements of this cancer journey. Are you ready for part three (and final for now) of the Menopause blogs? Let’s talk ‘alternative’ (read non-medical) Meno symptom management solutions and finally, my decision about what, if anything, to take. It’s probably apt that I am writing this in a place full of people living ‘alternative’ lifestyles or certainly appearing to be very happily in their own world…
The Tor, Glastonbury
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, The Musical
Menopause (Meno) part three (my final Menopause focussed post for now)
Wee recap; my MMmM project (Multiple Myeloma and managing Menopause symptoms) began by exploring the traditional medical models, asking my oncology team and gynaecologists for advice. I then turned to a wide range of menopause experts by experience and occupation for complementary, natural and alternatives to Hormone Replacement Therapy (HRT). I found myself falling into the world of Isoflavones, phytoestrogens, red clover black cohosh and more. Here is what I discovered…
Alternatives to HRT
Actually before we get it into alternatives, let’s be clear, one completely valid option is to take nothing and embrace the menopause process as a natural part of aging; to cope with whatever symptoms are experienced. However, for many of us, in the same way that managing difficult periods, pre-menstrual syndrome (PMS) or tension (PMT), difficult pregnancy, endometriosis, polycystic ovaries, fibroids and other gynaecological processes and concerns, it is either unnecessary to put up with unwanted symptoms or they are simply intolerable. Additional support is needed.
Below are some of the alternatives to HRT and practical solutions I encountered and many of which I have tried. Please note most complementary and alternative treatment options do not yet have robust evidence of effectiveness; though some women will experience benefit from some of these treatments.1
Isoflavones and Phytoestrogen
The definitions and characteristics (interesting nutrition and hormone stuff);
Isoflavones are crystalline compounds whose derivatives occur in many plants (especially pulses), often as glycosides. Phytoestrogens refer to a substance found in certain plants which can produce effects like that of the hormone oestrogen when ingested into the body.2
Isoflavones are oestrogenically potent phytoestrogens. The main dietary isoflavones, called genistein and daidzein, are mostly found in legumes such as soy, chick peas, lentils and beans. Lignans and prenylated flavonoids (also phytoestrogens) have potent oestrogenic activity but there are few studies about them. 2
Evidence is mixed about Soy
A recent study found a reduction in hot flushes when women used soy germ extract with 100mg of isoflavone glycosides.3 It is not clear from studies to date, whether frequent soy consumption explains the lower rate of hot flushes among different ethnic groups.4
Red clover and Promensil
Red clover, another source of isoflavones, contains compounds that are metabolised to genistein and daidzein after consumption. The most studied red clover product is Promensil. 4
- A ‘natural’, non-medical, easily accessible, alternative to HRT
- Growing evidence base that it works in improving unwanted Menopause symptoms
- A three-month dosage duration is recommended initially
- Not enough evidence yet looking at long term effects
- Just like HRT, it is unlikely to work for everyone
Managing women with phytoestrogens
There are few studies exploring Promensil and Isoflavones for the management of Menopause symptoms and other health benefits though fortunately the evidence base is slowly growing.
A recent review highlighted evidence supporting use of Promensil at 80 mg/day for treating hot flushes in menopausal women. This finding was consistent across 3 studies included in the meta-analysis. Promensil was found to be safe over the short-term duration of the studies (3 months).5
A more comprehensive review with a rather unfortunate name ‘Managing women with phytoestrogens’ also reviewed the studies mentioned above. (It makes me angry when its implied or explicitly stated women need managing!!) Setting this name issue aside, the researchers proposed that one of the most widely researched food supplements has been the phytoestrogenic preparation containing red clover isoflavones. Six randomised trials exploring the impact on vasomotor symptoms (night sweats, hot flashes, and flushes) were included, three of which displayed a significant benefit compared to placebo.6
Data from small randomised and observational trials showed benefits of using red clover isoflavones for osteoporosis and cardiovascular disease. Red clover isoflavones may also derive psychological benefits. Safety data is positive so far. The reviewers conclude with further studies would be welcome, particularly in women with significant medical risks.6
A 2018 paper describes a study of 50 patients where a combination of 40mg dose of Isoflavone along with calcium, vitamin D and inulin improved vasomotor disturbances as well as quality of life and sexual function in menopausal women. This was a small trial with a number of limitations so the results while promising, need further investigation.7
From the makers of Promensil (Check out their website and research claims)
Here are two sheets summarising clinical support for red clover Isoflavones relating to a range of health domains.
Clinical Support for Red Clover Part1
Clinical Support for Red Clover Part2
They also explain the difference between Promensil and other red clover products including soy isofalvones. Check it out here.
There had to be some debate, right? This is Menopause we’re talking about after all! Studies involving Promensil were reviewed, analysed and reported in a 2014 Cochrane review paper. 4 Only five trials met the search criteria and the authors argue that,
No conclusive evidence shows that phytoestrogen supplements effectively reduce the frequency or severity of hot flushes and night sweats in perimenopausal or postmenopausal women.
On a positive note the same review highlights the possibility of a positive outcome from genistein and concludes
…benefits derived from concentrates of genistein should be further investigated.
Read the full paper here.
Other ‘Alternatives’, Complimentary Medicine and Lifestyle choices for managing Meno symptoms
Beyond the better known isoflavones, I came across a number of other recommendations for using supplements, making lifestyle changes and employing complimentary medicine for reducing unwanted Menopause symptoms and side effects. I then went hunting for scientific evidence of each product’s effectiveness and began trying a few things out. Here is a list of the alternatives I looked into:
- Vitamins (A, C, D, E, K, Zinc)
- Omega 3
- Black Cohosh
- Chill Pillows (a new take on chill pill!).
- Chinese Medicine
- Cognitive Behavioural Therapy
- Non-hormonal pharmaceutical treatments
Some women have found benefits from natural remedies BUT the research is mixed and caution is advised. Check out these summaries; 1,8,9
Complimentary alternative therapies.
Natural remedies for hot flushes
A paper Mallhi et al with a long list of alternatives, dosage and known side effects.
Here are my discoveries in more detail; I hope they prove useful…
Probiotics and Vitamins
Now for a confession, I can’t remember exactly who told me to take probiotics and a full range of vitamin B’s, Calcium and Vitamin A, C, D and Zinc to help with menopausal symptoms (blame it on Chemo and Menopause memory impact!). I am 99% sure, I first heard this from my Nutrition therapist, then from the amazing lady who runs our local health shop and then finally I’m sure it came up in the interviews facilitated by Katie Phillips with Menopause experts that I have mentioned in my previous posts (See links below for some of the interviews and more about Katie). I take VitD, VitB and Calcium daily as part of my Cancer treatment as advised by my medical team so it has not been a hardship to add the probiotic.
Muhleisen’s paper highlights probiotics for reinstating vaginal equilibrium in menopause 10 and Britton’s paper advocates probiotics to prevent vaginal dryness and atrophy.11 Count me in!
According to a recent review, Omega-3 supplements may alleviate night sweats but not hot flushes.12
Vitamin C, D, E – more mixed results
A 2013 paper highlighted that Vitamin C and E reduce the intensity and number of hot flashes via promotion of adrenal function though it is very important that the correct dosage is used and no large doses are taken.13
In contrast, LeBlanc’s 2015 paper and 2010 studies (by Dennehy et al and Lerchbaum et al ) show there is no evidence that vitamin D or E helps vasomotor symptoms but do recommend vitamin C, D, K and calcium for maintaining bone health.14,15,16
Zinc and Vitamin K
Zinc and Vitamin K are positively associated with bone mass however I couldn’t find any evidence for either reducing unwanted menopause symptoms.17,18, 19
For healthy hair during menopause – vitamin Bs, C, Proteins and Fats
Sugar craving during Menopause – check your Vitamin C levels
Consider going VEGAN or simply eat more plants!
One study showed that vegans reported less bothersome vasomotor symptoms than omnivores.20
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
Chinese Medicine, Dong Quai, Ginseng
Another 2016 Cochrane review found insufficient evidence that Chinese herbal medicines were any more or less effective than placebo or HRT for the relief of night sweats and hot flushes.23
Non-hormonal pharmaceutical treatments (e.g. SSRIs often referred to as anti-depressants)
A 2010 review of studies found Clonidine, SSRIs and SNRIs, gabapentin and relaxation therapy showed a mild to moderate effect on reducing hot flushes in women with a history of breast cancer.24
A Chillmax Pillow
This is a wonderful, wonderful recommendation (thank you Sis-in-law and Mum-in-law!!) Slip it under your pillow case or lie it vertically down your pillow to provide your head and neck with a cool sensation. Ahhh, bliss.
Acupuncture 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
Cognitive Behavioural Therapy (CBT)
There is growing evidence that CBT can help reduce the impact of Menopause symptoms.27 The British Menopause Society have released a helpful leaflet that has been endorsed by the UK National Institute of Clinical Excellence (NICE).28
Alternatives to HRT and Cancer
A 2013 systematic review of soy and red clover as used by breast cancer patients or those at risk of breast cancer, found a lack of evidence showing harm from use of soy with respect to risk of breast cancer or recurrence. Soy intake in line with a traditional Japanese diet (2-3 servings daily, containing 25-50mg isoflavones) may be protective against breast cancer and recurrence. Soy does not increase circulating estradiol or affect estrogen-responsive target tissues. Prospective data of soy use in women taking tamoxifen does not indicate increased risk of breast cancer recurrence. Evidence on red clover is limited though existing studies propose that it may not possess breast cancer-promoting effects.29
A 2015 study proposed a combination of Soy and probiotics may have potential for reducing the risk of breast cancer.30
Another three-year study concluded that when compared to HRT, Promensil was safer as there was no effect on known breast cancer risk factor.31
New shoot amongst the dryness
Menopause, Sex and Vaginal Dryness
Let’s talk about sex baby, let’s talk about….sex. Remember that track by Salt n Pepa? Except I’m talking about sex during Menopause. Many women find sex painful due to vaginal dryness or don’t fancy sex at all as Meno creeps up on them. Women – you do not have to put up with this state of affairs. For dryness, there are medical issued and organic/natural products that can make a real difference. Consider trying out Yes (mostly organic) or Sylk products. Here is a link to an article 32 which includes a comparison between multiple product options. How Important is vaginal lubricant and moisturiser composition? If you are concerned that your vaginal dryness might be severe and not easily solved by a moisturising lubricant you may be interested in this presentation on Vulvovaginal Atrophy (VVA). It has some great info on the moisturising lubricants too.33
Will I go through Meno twice?
One thing the gynaecologist did say is that I am very unlikely to have to go through Menopause twice; that is, it shouldn’t reverse once my chemo stops and start again at a later stage. That seems like a kind gift from the Universe. I’ll hang on to that.
Of course, I will still be part way through my own Meno journey, living with the uncertainty of not knowing whether mine will finish after 3 years, 7 years or be considerably longer lasting. Hey, so long as the symptoms are managed and I continue to feel myself, I am happy and willing to embrace this new, wondrous, challenging and clever process, my body goes through. Hopefully too, in a few months’ time, after being on my chosen treatment and monitoring symptoms, I will be much clearer about what is a Chemo or Cancer induced symptom versus a Menopause symptom. Meno and hormones may no longer be a fall-back excuse for my ‘well aren’t I moody today’ moments!
So now to my decision:
For me, taking nothing is not an option at this stage as maintaining an even mood, improved libido and reducing hot flushes are a must. Do I try Promensil and or trust in the gynaecologist who was adamant HRT was the way to go? I wonder what is holding me back. I think it is my oncologist with the anti-HRT opinion that is still bothering me; I need to have another talk with him.
My Decision(s) and a U-turn
Talking and researching must stop at some stage and a decision be made. Continued talking and researching can make decisions much harder to make; there will always be contrasting views and experiences. A stake in the ground, a baseline, is needed. I must make the decision that is right for me with the information I have today. After all, I know any decision is not set in stone, I can change it later, if new information comes my way, or my body doesn’t like the solution I try or the decision stops feeling right to me.
So, what’s it to be?
I’m going to start natural plant based bioidentical HRT gel and progesterone tablets.
Except I’m not. Deep Breath.
Just when I had decided to start natural plant based bioidentical HRT (I had even submitted the prescription) my Mum, my very precious, kind Mum, was diagnosed with breast cancer. Deep breath. I won’t talk about this now, other than to say, the all important public health system has once again appeared to have caught the little nasty early; thank you health teams, thank you Universe.
Now, with breast cancer in my family, my chances of getting secondary cancer (and breast cancer) seemed to have leapt from a statistic to a reality. Another deep breath. Talk to self; be sensible. I let my med team know and asked for a mammogram and a chat with the breast cancer team. My oncologist referred me immediately.
I had based my ‘go with HRT’ decision on two factors in the end: a) The delivery mechanism for the estrogen component is via gel and does not go directly through my liver and, b) the research investigating HRT side effects and long term effects is present and more robust than Promensil, at this stage. Although now…
Out with HRT and in with Promensil
The HRT rational above was discarded considering the increased risk of secondary cancer and my recent family diagnosis. Promensil now seemed much more appealing. Despite the lack of larger and longitudinal studies, I decided Promensil was work the risk. I needed help and I was being monitored extensively each week; if a negative impact occurred, I figured it would be picked up quickly and I could stop Promensil immediately.
Two other things helped me embrace this decision; it felt right as soon as I had made it (a better feeling than I ever had with HRT) and it fitted with the additional chat I had with my oncologist. He knows me best, is a clinical lead and has spent most time with me over the last 15 months. He has my best interests at heart and has always coped with my endless queries and requests for repeated explanations. While I do trust the others in the haemo-oncology team, I gave weight to his opinion and his caution over adding this long-term medication into the mix. He said he felt HRT would add extra risk, risk that wasn’t able to have a statistic put on it due to my individual circumstances and the few studies exploring HRT and Myeloma relapse.
Finally, I am reminded that while I usually place my store in scientific evidence, just because something hasn’t been rigorously studied yet, doesn’t mean it won’t later be discovered to be beneficial. Cannabis oil for chronic illness/pain and ketamine for some mental health disorders spring to mind, as substances we might have first thought of as harmful yet in certain doses and conditions, have been found to have positive outcomes. Mindfulness didn’t start out with an evidence base, yet now, it is well established as having beneficial outcomes in many circumstances.
Therefore, I have taken the risk (whatever that is) of introducing yet another supplement/medication into my life.
Promensil 80mg Red Clover Isoflavones
Promensil = Improvement (my case study so far)
I started Promensil while conducting this research and then stopped when I thought I’d better gather the evidence first and make a more informed decision. I was a bit reluctant to stop as I hadn’t noticed any adverse effects and there had seemed to be an improvement in Meno symptoms. When I stopped, the night-sweats returned with a vengeance.
Promensil is shaping up to be a wonder product for me. Although I am open to the possibility it is a placebo effect. Now back on it, I have taken one pill, once per day, for six weeks (the double strength version). Much to my delight the full body night-sweats with drenched bed linen and night clothes are no longer!! I don’t remember having one in the last fortnight at all! Plus, a lovely UK heat wave have meant nights have been hot (in the mid-20s Celsius/77 Fahrenheit at times). The improvement timing couldn’t have been better, otherwise I think I would set the bed and house on fire or internally combusted!
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.
Menopause was hard to write about
I have found Menopause hard to write about. Maybe I hesitated because I wasn’t sure whether I was going through it or not: the symptoms are so like those that accompany cancer and chemo. No, that wasn’t it really, I was embarrassed, at first. Outside of my very close friends and eventually, close clinicians, I have found it one of the hardest subjects to raise. I’m not sure why. Especially when, I am a psychologist who believes in taking the unhelpful stigma out of, well, EVERYTHING.
Menopause has been more difficult to disclose than cancer: WEIRD. Talking about menopause with and due to cancer and chemo: DOUBLE WEIRD. This combo takes Meno, ‘to another level’ (the catch phrase of 2017-18, I’m sure). Talking about some aspects of Menopause have been harder than others; vaginal dryness for instance. For some reason, I found this really hard to write/talk about. Worried I’d be judged maybe? Worried people would assume I was experiencing vaginal dryness and for some reason not wanting people to assume that everything I write about, happens to me? Strange, given mostly it does, and the blog is of a personal nature. But that’s the point isn’t it. Get talking. Reduce stigma. There is nothing to be embarrassed or awkward about. These processes are natural, they do not need to be hidden, talked about in secret or god forbid, suffered in silence.
I think underneath it all, I believe my and many European societies or so called developed countries with an individualistic tendency, associate women, during and post menopausal as old, unsexy, and past it. I know that simply isn’t true. Sophia Loren, Helen Mirren, my Mum, spring to mind – all sexy, awesome women, regardless of age. Yet I worried and continue to worry about feeling and being: old, unsexy and past it, particularly when my skin gets thin and wrinkly from steroids and chemo, my grey hair becomes more abundant and my energy or libido feel low. I worry when I stop feeling like myself.
All is not lost; applying psychology skills, and finding psychological flexibility, I constantly and consistently challenge these thoughts and feelings. Though some days it is hard to do. I remind myself of a new more helpful perspective. I take time to reflect, recognise and acknowledge that I haven’t felt old or unsexy every day or every moment of the day. In fact, I have and do feel mighty fine, a lot of the time (another rhyme?). Not bad for a woman fast approaching 50.
Menopause communities…have you found yours?
Thank goodness for the new wave of open discussion about Menopause and growing social communities like the Menopause Café movement. It’s about time. Here are two Meno stories and an episode of Loose Women about Meno. You may also want to check out the magazine Menopause Matters. I’m very grateful for Katie Phillips, her wonderful interviewees, the menopause café team, the celebs who have shared their stories (Kim Cattrall, Zoe Ball, Meg Matthews, Lorraine Kelly to name a few (see their and others’ stories here) and the ordinary (spectacular) women in my life who have disclosed their menopause journeys to me. Thanks for helping me get over my embarrassment by reminding me; I am not alone and that my Meno related decisions will be the right ones for me.
I have a lot of time for the author Christine Northrup with her interest and application of both her medical and holistic complimentary health expertise. Here is one of her books that you might find particularly useful.
The Wisdom of Menopause
Please do share the link to this blog, ask any questions you may have and do let me know:
- What has been the hardest part of your menopause or menopause with cancer journey?
- What has been the hardest part of caring for someone going through menopause or menopause and cancer?
- What have you discovered?
- Your Meno poem
Resources, References, Study papers and more:
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