Yo. Hello y’all. It’s been a while since I last blogged, a few weeks after my breast balancing op. Loads has happened in the meantime: DH and I hosted ‘Polish Easter’ for the first time, which was rather special; we took the kids to London on DH’s birthday, including brunch at the Wolseley, the Hockney exhibition, and the London Eye; work flooded in; I submitted the first 5,000 words of my novel to a Good Housekeeping competition; we found out that DS will be joining DD at her school (of which more another time); and after some stiff negotiation by my amazing DH, a group of neighbours yesterday finally all signed up with a small developer to sell the bottoms of our gardens.
All of which has happened under clouds real (sodding rain) and metaphorical. It’s the tamoxifen, you see. A rather unpleasant side effect has crept up on me over the past couple of months. Not hot flushes and night sweats, as I had the first time I tried the drug a year ago, but a severe and at times fairly debilitating state of permanent PMT, combined with waves of deep fatigue. Mood swings, to the max.
Well, it is a rather powerful hormone-fiddling drug, designed to stop my particular sort of pesky cancer cells taking hold in either breast again. Apparently this is common: about six months after starting the meds, a raft of side effects tend to kick in, hang around for about six months, and then settle down for the rest of the five years it is prescribed for.
I am so up and down it’s not funny, for anyone, least of all DH and my precious kiddies, who are constantly on tenterhooks to see what mood I’ll be in. They scan my face anxiously: are there signs of softness, affection, a smile, playfulness, understanding, patience? Or are they about to feel the Wrath of Mummy for the smallest misdemeanour? I notice there is often a silent pause after a spillage or similar, as the children hold their breath, frozen, waiting to see whether the eye of the hurricane will pass by and come to nothing, or they are going to get caught up in its distressing and noisy disturbance.
No-one in this house knows whether, on the spilling of a drink (which happens daily with a 3yo and a 5yo) I am going to say ‘never mind’ and just wipe it up, or whether I’m going to go completely ballistic and shouty and throwy, and turn a small accident into a major ‘state of the family’ incident.
And that includes me. Because it genuinely feels like I am not fully in control, most of the time. Not an excuse, I know. But I am as surprised as everyone else about the speed and force of my disproportionate anger. It’s usually confined to those I live with (don’t we always hurt the ones we love the most?), but there have been a few occasions where I have flown into a rage at other family members and friends, and they have been shocked, not recognising the roaring harpie who has replaced me. After an angry episode, I feel drained, and sad, and terribly guilty, and wish I could turn back time and react differently.
Other times I feel so exhausted and low that I just want to go to bed, in the middle of the day, and I can’t seem to get my thoughts straight. I cry silent, prolonged tears about nothing in particular. My brain won’t work properly. I find making plans difficult, and I stutter and mix words up when I read stories out loud. Sometimes I resort to absolute crap for the kids’ tea because I cannot muster up the energy to make anything healthy, and have the inevitable battle of wills about what they will and won’t eat.
I have little tolerance for excessive noise. I am irritable, unresponsive, and disengaged, some of the time. My joints ache. My hands and feet tingle and fizz. Life is un-fun. DS tells me every night he doesn’t like me when I shout, but he knows I still love him even when he’s naughty. This breaks my heart.
I am also starting to realise that tamoxifen and alcohol are not best mates. A couple of glasses of red are fine, but put white wine, and especially fizz, into the mix and I get drunk teenagerly quickly. While everyone else at the party might have a slight fuzzy head the day after, I am panicking because I have a huge gap in my memory of the evening and have to check with everyone whether I need to apologise for anything. Blackouts are not conducive to mental equilibrium. So I don’t really look forward to going out any more, because I can’t relax and enjoy myself like I used to.
And then other times I am completely fine and feeling like the best of myself: calm, cheerful, full of energy, funny, creative, clever, organised, and capable. This happens most when I am at work, writing and editing silently at my desk overlooking our monkey puzzle tree, focused and in a flow that takes me very much out of my own body and far away from the torturous maelstrom. Then I have peace, and clarity. The sunshine helps enormously, and goodness knows we haven’t had much of that lately.
In some ways, this is tougher than going through chemo. It’s doubly hard because as far as I, and everyone else, is concerned, the whole caaancer thing is over, and I’m well. Quite rightly, everyone moves on with their lives. But I am reminded frequently that it is not over, not by a long way, and sometimes it feels a bit of a lonely struggle after so much love and support for so long.
I have another four and a half years on tamoxifen. I am hoping things will settle down at some point soon. The only solution my consultant mooted, last summer when I took a break from my first attempt at taking the drug, was to also take anti-depressants – SSRIs – to even me out. I’ve been on anti-depressants a couple of times in the past and although they work beautifully, I’m just not keen on taking medication to combat the side effects of medication. It seems like the start of a vicious circle. And you do rather lose yourself on SSRIs. Comfortably numb. Don’t want to go there again, really.
The other options are to investigate the complementary routes: kinesiology to try and reduce my reactions to the drug and keep my energy balances; herbs and supplements to take the edge of the extremeness of the mood swings. Plus fresh air, deep breathing, exercise, healthy foods, soothing teas, reading, meditation, laughter: anything that increases my background sense of wellbeing.
So. I have blogged this one out. Time to get back to client deadlines while keeping an eye out for any blue sky peeking through the clouds and the drizzle. And wait to see what mood I will be in when my babies get home from school and pre-school today. I hope I will smile at them and make them feel safe and loved, rather than fearful and confused. But I just don’t know.
Oh yes. The mood swings. They do pass. I took Evening Primrose Oil which may or may not have done any good….. someone else I know swears by Agnus Castus (my spelling of that may be way off). This is going to seem like an odd thing to say, but the fact that you are aware that they ARE mood swings and NOT you, or your world, is a really good thing.
Hang in there, and be well.
Thanks Stephanie – love your Bah to Cancer blog, by the way! You are an amazing lady and I really appreciate your reassurance. xxx
Thank you for sharing the reality of “life on Tamoxifen”. I thought that just taking a pill every day would be such a cakewalk after chemo and rads, but as you say it is not. It is a heavy duty drug with difficult side effects.
However, I have now been on Tamoxifen for 2 years. Really? Two years already? I don’t find it easy but I guess I have gotten used to it. I still have pretty horrible leg and foot cramps, flushes (but never in cold weather – how unfair is that?!) and kind of balance issues to name but a few side effects. But the frame of mind seems to have stabilised which is very welcome.
I wish you strength in this, and send a big warm hug from over here
Thanks lovely. Two years in – wow, well done you! Yup, popping a pill every day should be easy peasy compared with the horrors of chemo and the tedium of radiotherapy. But, as you say it’s bloomin’ difficult to cope with sometimes. xxx
It’s not only the Tamoxifen you’re reacting to – it’s everything that’s happened over the last year or so. Your body will take its own time in finding its way back to normal. Just give it that time and be gentle and patient with yourself. Lots of love – Pam
Well, yes, that’s another way of looking at it: I am finding my way back to normal, in all ways. Just wish I knew what normal is meant to look like! Before-the-Big-C-normal isn’t necessarily where I want to be either. Finding my way forward, maybe. Thanks Pam. xxx
Blogging it out is always a good idea – and it’s great to read your honesty once more. Don’t know if it helps, but I suspect most of us don’t feel like we’re in control for most of the time. Sending love and hugs xxx
Ha! That’s another thing that preys on my mind, though: what if this is just what I’m like, now, and nothing to do with the drugs? Scary. xxx
I was going to say what Pam said. As well as the Tamoxifen, it could be due to everything you’ve been through. What you said resonated with me, albeit to a lesser extent perhaps. Mine was cancer of the womb (with a little on an ovary) so I had a year of tests, ops (including a hysterectomy), chemo & rads. I’m now 6 mths out of treatment and, while I’m getting a lot better and getting more ‘normal’ (although you’re not exactly the same person you were before) I do have ups and downs, which in itself is probably normal considering all that we’ve been through. I’m concentrating on my health & making changes and am taking part in a research study with Southampton Uni to look after the effectiveness of life coaching for people after cancer. Just started & it’s all about goal-setting at the moment. I have to watch though, as I have times where I think I’m ‘normal’ again & prob try to do too much, then have periods of fatigue plus what’s happened is a lot for anyone’s mind to cope with. I suppose we have to be patient, we’re not going to spring back immediately to where we were and there might be a process of change to adapt to life after
cancer. We had a lot of support & used various methods to get through our cancer treatments, so we just need to continue to use everything we can to help us to get to our best lives ever. The journey doesn’t finish at the end of treatment. Wishing you all the very best! xx
Thanks for such a long and thoughtful response Fiona. I’m a huge believer in life coaching, as a trained coach myself, among other things, and you have reminded me to book another appointment with my Health Creation Mentor, Kit, who is basically a health and wellbeing coach. I think sometimes the massive psychological impact of the diagnosis and treatment, in the medium term, is underestimated. So maybe it’s not all the drugs…xxx
I can’t stop reading , about your battles with cancer, as I understand so much more , about it, and can relate to all the horrible tests, meds, operations, and just coping with everyday life issues.
I have my ,,pest,, friend going through the same battle , right now.
Your honesty comes out in your writing , and I know you are a lovely person, as is my dear friend.
So stay strong, positive and I hope to meet you, as my daughter calls herself your new friend,
Hailey’s mom , Susen. She has recommended your reading, which I enjoyed emensley., being a cancer survivor, myself, since 1981.
I count my many blessings , every sleepless night, and thank God for every new day!
So glad to hear my daughter had found a new , lovely friend, and hope Hailey will find lots in common with your daughter.
Hugs from Carol,
From Toronto, Canada.
I feel for you! Be as forgiving of yourself as you would be of other people. My hormones have been the bane of my adult life and I have struggled with PMS for the majority of it, which includes scary moodswings. My advice would be to complete a diary for a week or longer if necessary to try and see if there is a pattern to your moodswings. You may then be able to carry out some interventions to help make them more manageable for yourself and yor family.
Lots of Love
Tamox is a monster. It gave me severe anxiety, and I have never had anxiety in my life. Truly hoping it will settle down for you. Have you heard of Brevail? Supposed to help – a natural supplement.
I think I know exactly how you feel. I took tamoxifen for two years, and had the same experiences that you write about. Every one said it’s the drug and the cancer and everything else – but it wasn’t. It was just the tamoxifen (and the antidepressant). Aftee two years, I just couldn’t stand pretending this was “normal”. I stopped taking it and weaned myself off the antidepressants – and felt so mich better. My husband said it was so good to have the old Dianne back. It’s a quality of life decision. I just had to stop.
I wiah you well and hope everything works out for you.
Thanks so much for your comment Dianne. It’s a bit decision to make but you’re right, it is a fundamental quality of life issue, and life is about more than just our bodies – it’s about our minds and emotional state too. I’m sure I’ll be able to ride out the next few months or years, but if it ever gets too much, I’d like to think I’d be brave enough to put my life and relationships right now first. Best wishes xxx
It’s so good your wrote this post. One because it will help others become more aware of what you’re experiencing (including family and friends), and two because – in my opinion – becoming aware of the mood swings is the first step to working through them. Complimentary routes may be an option to explore. I hope this soon passes. And about that cancer being over thing, I’m afraid a lot of people think the struggle stops once treatment ends. But this post is going to help those around you realize otherwise.
Fabulous post. These are my favorite words, “In some ways, this is tougher than going through chemo. It’s doubly hard because as far as I, and everyone else, is concerned, the whole cancer thing is over, and I’m well.” This post illustrates beautifully another reason why it’s never really over. There’s always something. Thank you for sharing so honestly.
I’m in the middle of a series about mothers on my blog right now – http://www.loishjelmstad.wordpress.com – and I don’t want to interrupt it to put out a post about this issue, but these messages compel me to share a poem from Fine Black Lines with you.
And When She Was Bad
You’ve seen the ugly side of me
the livid, darkened, screwed up face
You’re heard me shout some bitter words
(intense for even human race)
You’re watched me tear up tender roots
of love, and hurl them to the wind
(in total rage at faith and light)
and wondered how some day I’d mend
the fences that are trampled down
and yet–your arms are always there
your heart absorbs the fiercest blows
your rough hands stroke my rumpled hair
You rock me ’til my inner child
has spent her fury and her fear
and when she smiles and reaches out
she finds that you, my love, are here
(Excerpted from Fine Black Lines: Reflection on Facing Cancer, Fear and Loneliness, copyright 1993, 2003 Lois Tschetter Hjelmstad)
I love this poem!
Wow. That poem made me cry. So true. Thank you! xx
Good post on real life on tamox. After almost a decade, I finally went off all drugs a couple of years ago – so good to be drug-free! I started/stopped/started tamox several times: start, off for more chemo; start again; try shutting down ovaries to start aromatase inh. (ovaries refused to cooperate); start again…. My mood swings were always the worst for the first several months,then my body would level out somewhat.
I feel for you & hope that things cool out for you! Thank you for writing so honestly about this. For such a long time, docs ignored the emotional side effects (way too many still do). They said we’re just stressed about cancer or having trouble adjusting to life after active treatment was over (WTF!!??). It’s important for all of us to keep talking about all of it.
Never forget that tamoxifen is oral chemotherapy. It’s not just a pill. I had to quit it after a year. I could barely function. Tough decision, but it only added a single-digit improvement in my recurrence risk. I had to decide that was not enough. Quality of life is important, too. I talked it with my onc. She agreed. And I felt better almost immediately after stopping. Hopefully, someday, they’ll figure out a way to manage estrogen-positive recurrence without treating the estrogen itself like it’s poison. Estrogen is not the enemy. Cancer is. Hang in there!!
Sounds tough going but it’s good to see you blogging again even if you’re not able to do it too often. There seem to be some really helpful comments here. I wish I could add something but I do tend to agree with those saying that you’ve been through such a lot, may be it will be a while longer before things balance out. It sounds as if it will get easier, which is something to hold on to. As has already been said, hang in there xxx