Wednesday, 4 January 2012

A Side Effects Text Book

In my formative years I was a collector of bouncy balls (by my own choosing), postage stamps and spoons (those were my grandfathers preference) and stickers (me again).
In my early thirties I'm acquiring quite an impressive collection of something a bit less tangible and much more varied. If ever there was a side effect printed on a Tamoxifen leaflet, I am very likely to be experiencing it. In fact, even things that aren't printed on there, but on further research are always likely caused by Tamoxifen, can be added to my collection.

Another problem is I'm a Google-phobe when it comes to anything medical. I would rather wallow in my imagination than look up some nutjob Internet theory on how my aching toe means definite metastatic disease, caused by buying apples that come in plastic bags or putting my bed 90 degrees from the window. So I'll go a good few weeks worrying about said toe before Katie invariably looks it up and tells me it is Tamoxifen induced. (Metaphorical example; An aching toe is just about the only thing I don't have.)

So far my impressive collection consists of:
Aching joints. Or joint, since its just the one hip, but by gawd is it annoying. Before my scans it was terrifying, but now I know my cancer is contained to my nit (non-tit, remember?), its been demoted to annoying again. Serious enough to warrant an occasional 'rude boy bowl' that embarrasses DadJokes no end, and, deep breaths, makes me avoid high heels. That is serious.

Concentration issues. A testament to this is the four half written blog posts I have in production at the moment. Also the need to re-read the same paragraph of my book 3 times before I can move on. But that could equally be because its a sh!t book.

Bad eyesight. After squinting at one too many no. 38 buses I went to the optician, and sure enough, dry eyes and potential retina issues are to be expected for the next five drug taking years.

The Wobbles. A collective term that covers everything from getting disproportionately irate at the lack of order in the spice rack, to crying at Hollyoaks.

Hot flushes that would make Madonna admit her age and go into retirement. The worst part is the late night duvet battle. He wants it on I WANT IT OFF OFFFFFFFFF GET IT OFF.

Desmond has no such issues

Er, WC happenings, or not happenings as it were. Gillian McKeith would not be impressed...
I'm still waiting for the promised levelling out as my body gets used to the drugs, but since I am not a seasoned tablet-taker, I'm not sure how long I'll have to squint and sweat before my body cooperates.

In an attempt to tackle 'The Wobbles' I admitted defeat and went for some extra help. Now, I'm all for anything that will magically make me feel better, but I have a funny feeling about anti-depressant drugs since at my all girls school, a Prozac prescription was seen as a sign of extreme coolness, depth of character, and a ploy to make Mr Willis from Physics fall in love with you. I'm not sure where the reasoning comes in, but mental illness was thought to be veeery attractive in my fifth year. I couldn't get my head around it then, and still now am more prone to go the psychological route of learning coping mechanisms, than taking a pill.

When you cry at Hollyoaks, psychological care is maybe not enough, and faced with my recurrence fears being realised I signed up for some magic pills. Um, if being too tired to blink and too despondent to put effort into saying words is helpful, then I can do without thanks. The 'these tablets may make you feel worse before they make you feel better' warning on my particular leaflet did of course refer to me, (text book), but when I was still waiting for the feeling better part three weeks later I gave up and went back to good old fashioned family cuddles and Michael McIntyre on the telly. MUCH better. The good news scan results must have helped too, but I realise if I can avoid tablet taking, I will. I'm no Jennifer Saunders, although I'd love to know what she's on such that she raves about it in the papers.

My alternative therapies include retail, feline and social, so while I recover from my latest op I'm looking forward to a lot of the aforementioned, just to get me through you understand. 'Scuse me while I open a new tab; The net-a-porter sale is calling...


  1. I don't know how things work in England but here in Australia you get access to a psych/counsellor/therapist whatever you want to call them.

    Personally, I think you are well and truly entitled to a case of the Wobbles on a regular occurence. I know I have one ever few days or so. Luckily mostly at home. But that's because I can feel the onset and stay home. My boy can see it coming and exits the premises for me to have 'quiet time' otherwise known as a good book (ditch that shit one and try another) or some time online catching up on blogs.

    If that fails to improve the woefulnesses my other therapies also include feline and retail but social not so much. Happy bouncy dancing singing music played really loud works too - you know that cd that you cant not dance/be happy while listening to it? I highly recommend it. For me it is Pendulum!

    I hope the side effects ease off soon, for me it has been anywhere between one and three months on past experience. I had a major case of the shakes to begin with, so bad that I couldn't type, hold a fork, write, do eye makeup or anything. That was Very Frustrating!

  2. Hi Sophie, I am nearing the end of my five years. I can't believe I have got here. I still suffer with the Wobbles and examine every ache and pain with nervous anticipation, but my concentration has returned and I no longer suffer from the sweats. You will find your way to cope.
    love Billy

  3. Grr to side effects. I hope they wear off soon.

    You could try two single duvets on the bed? We went on holiday to Copenhagen just before Christmas, and encountered this set up. No duvet tusseling (no duvet stealing either), and I think the boy would have been much happier when I had a fever a couple of nights ago and threw all the blankets off both him and me if we'd had two duvets. As it was, he shivered patiently until I realised what I'd done.

    Macmillan have psych nurses (I only found that out when a friend was referred to one) - your consultant should be able to get you a referral. Another tool for the toolbox.

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  5. Hi Sophie

    How I love your posts! It's like reading a posting from my own crazy head. I'm not on your drugs and won't be as I'm triple neg so no drugs can control my cancer (which is good for the fact I'll be drug free but a bit worse for recurrence) but I do relate to many of your side effects. Hot flushes from being thrust into an early menopause are a pain at night and as a habitual insomniac they're a real problem - I wake at 2 or 3 am in a sweat and can't get back to sleep *at all* so I'm shattered and emotional the next day, making said 'Wobbles' even worse.

    The Wobbles I have most days at the moment though I've just finished chemo and anticipating a possible mastectomy; it's not a particularly good time! Sans wig I look like a Cabbage Patch doll from all the weeping (not a good look hence making me feel worse).

    Recurrence fears dog me daily and every ache is *always* cancer. The doctors tell me it hasn't spread and it's too early anyway for secondaries so I have now developed the bonkers fear I've an other, unrelated but undiscovered primary (some days it's ovarian, some days it's colon depending on the ache). I'm being frog-marched to go the doctors tomorrow to have the latest thing checked out as my family can't take any more of it.

    I'm with you on Michael McIntyre and just watched the Xmas special that had me in fits. Also Gavin and Stacey has got me through many a dark day; I truly believe the NHS should give you a box set of the entire three series at diagnosis.

    Some practical things: do you know about the breast cancer care 'young women's forum'? I'm hoping to go the next one which will be in Jan or Feb? They are weekend/one night events with lots of talks from experts on different aspects of cancer (diet, relaxation, stress etc), some practical workshops and socialising with young women in same boat which I know I'd find helpful as I feel so isolated and abnormal not knowing anyone going through this (though perhaps, with this blog, you've had enough of talking to other young women with cancer?)

    Also, have you checked out Cancerkin at the Royal Free? They have an amazing menu of complimentary therapies and they're all free. I've been having acupuncture for side effects and Reiki (on the latter, despite total skepticism I love the therapist and I feel absolutely marvelous after each session. It even cured my concrete doxetaxl legs: I came off the bed floating after one session).

    Finally, I do try to do mindfulness meditation as often as I can (managing about 3 or 4 times a week but every day is better). Check out Jon Kabat-Zin's 'Living the Full Catastrophe' and get some tapes, his voice is amazing.

    Good luck and here's to a happy and healthy 2012!

  6. Hi Sophie,
    Great always. I started Tamoxifen 2 months ago. I googled the hell out of menopause side affects and what you can take to prevent them. I take vitamin e, evening primrose oil (doctors recommendation) and vitamin c (the c is to help your body absorb the e and evening primrose). I also eat/swallow to spoonfuls of linseeds/flax seeds daily. The linseeds play the part of putting oestrogen back into your body (the natural way). So far the side affects are not bad but not sure if its too early days since i have only been on tamoxifen for 2 months. Also my doctor recommended the Menopause Cake and Burgen bread. I made the menopause cake and its not as bad as you think. It could be worth a try for you. Keep up the blogging they really keep me going xx

  7. Sorry your having such a reaction to the tamoxifen :-( My night/day sweats have basically stopped now (been on the drug for 6 months). My current issue is the weight gain. If I'm having other side effects, I'm not noticing them, which I suppose is a good thing. I did make my hubby read this posting though, so when he thinks I'm moody or just simply being a bitch, he may realize there is more to it then that. Here's to a new year, and a long 5 years of sweating and bitching on tamoxifen!

  8. Ha ha, the last post inspired me to add this couple of lines:

    To all the hubbie's out there:

    She will turn into the most moody, wretched, cow-faced, mean, irrational, erratic, dysfunctional git-faced, shouty, sweary, obnoxious, disagreeable woman..

    Anyway, enough about life after 30...

    Just you wait till they start on Tamoxifen !!

  9. I'm so sorry you have to deal with all this. Its such a shame that someone so young and full of character has to deal with it all not once but twice. I think you are dealing with it all amazingly well and I'm so glad the cancer hasn't spread anywhere else. I am constantly in a lot of pain with my joints and the best thing for them is a heat pad or a hot water bottle. Believe me they are a lifesaver! Keep fighting and keep shopping,it definitely helps! XxxX

  10. Hi Sophie, my Tamoxifen side effects wore off after a short time and everything was fine. Six weeks ago I started on Zoladex and it's hell again. The flushes and night sweats are leaving me exhausted. My baby days are over but the amount of times my sleep is broken is the same feeling. My hubby suggested buying the duvet which has 2 togs. I could have the thin flimsy side but the problem is when I am not flushing I love the weight and warmth of my thick duvet. At least I can now drink a small amount of alcohol again. Recently if I just sniffed alcohol I had a cracking hangover. We are both too young to be experiencing this, it's crap! Clare xx