Hormonally Yours

This hormone positive cancer is a funny ol’ business and I have found it particularly tricky to negotiate the medication side of things.  Initially I was prescribed Letrozole and what fun we had together!  Joint stiffness and muscle cramping were just the start.  Since a change is as good as a rest Brainy Spice and I decided try both a break for six weeks and then changing to Exemestane.  My problems got steadily worse.  The joint pain and muscle cramps were, at times, crippling but by far the worst was the way it messed with my head.  I was not sorry to say goodbye to that.

So what now?  Since January I have been taking Tamoxifen.  There are still issues but things are much improved.  But dealing with the fabulous, gorgeous, and beautifully warm weather we’ve been having has been, erm, interesting!  My biggest issues are with hot flushes, sweating, muscle cramps, and insomnia and this is how I have been managing them.

Hot Flushes

• Clothing: I have mentioned before that my clothes have been on and off me faster than a sex worker’s and this remains true.  So my first tip is to wear nothing that cannot be rapidly ripped off as soon as your temperature goes up.  Layers.  Layers are the thing.  And natural fibres.  None of your spandex or nylon, thank you very much.
• Fans: no, not an adulating crowd.  Rather, a small hand held electric fan.  I got mine from Amazon and love it because it is rechargeable!  Concertina fans are great too and easy to carry in a handbag.
• Chillow: this is a cooling pillow to slip in your pillow case for those unbearably hot nights.  Bliss.  Also handy for managing migraines if you happen to suffer.
• Auricular Acupuncture: I had a course of this as soon as I started on Letrozole and then a couple of top up sessions last year.  This worked really well to begin with but sadly, since Tamoxifen was the new kid in town, I have not noticed a difference.  But I would definitely recommend it as I had twelfth months of relief that I suspect can be attributed to it.
• Shade: seek it out wherever possible as it still allows you to be out of doors, topping up your vitamin D levels, and enjoying the sunshine without feeling like you are turning into slow roasted joint.  Or a carbonised kebab.
• Pills: the thought of yet more medication was not appealing, but thanks to the head messing that Exemestane had done, I was already taking the antidepressant Sertraline.  The wonderful Doc suggested I switch to Venlafaxine as it was known to help reduce hot flushes by up to 50%.  Sounded good to me and I can honestly say it has been incredibly effective.
• Ice: in your drinks.  Especially gin and tonic. In all seriousness, alcohol is something that may make your hot flushes worse.  But I decided life was too short to give up on it entirely.

Sweating

• Clothing: as above but when it comes to night sweats, besides the chillow, my best advice is layers of bedclothes that can be easily thrown off and frequent changes of sheets.
• Make up: I have pretty much given up wearing skin make up after it slid off my face within ten minutes of application once too many times.  I still use eye make up and lippy but that’s all these days.  The ‘au natural’ look is definitely the best one for those inclined to a sweaty face (*puts hand up).
• Lens cloth: thanks to regularly steaming up my glasses with hot flushes and sweating, I generally carry around a lens cloth.
• Ice: in your drinks.  Especially gin and tonic.  Have I mentioned this before?

Cramps

• Exercise: bit of a dirty word for me but frankly I should just get over myself.  Because on the days when I have done more than just lounge about, I definitely have fewer problems with cramping.  Either a short energetic walk or a longer more ambling stroll works wonders.
• Fluids: drinking plenty and keeping hydrated also seems to help.  I tend to drink a lot of water anyway but on the days when I have less, again, I notice the cramps are worse.
• More pills: Quinine, to be precise.  I am not taking it daily, rather I take it as and when I need it on the advice of my GP.  Since taking it I have fewer nights when I am leaping out of bed with leg cramps.
• Tonic: forget the other drinks.  Tonic has quinine in so it’s basically good sense to drink it.  But it would be rude not to add gin.

Insomnia

• Audiobooks: I have always been prone to insomnia but Tamoxifen or Venlafaxine have taken it to a whole new level.  Chemo also left me with tinnitus.  To combat the tinnitus while falling asleep I started listening to audiobooks.  It is delightful.  Just like having a bedtime story read to me as a child.  The upside of this is always having something to play when I surf the night on the surface of sleep rather than sleeping soundly.  Now I find I can tolerate periods of wakefulness with far greater peace.
• Exercise: that old chestnut.  Again.  But it does work.  I definitely sleep better for a good walk in the fresh air.
• Windows: sleep with them open!  Earplugs are a godsend if your neighbourhood is noisy.
• Time: you have more of it for your gin and tonic so it’s not all bad!

I am sure there are other tips I have missed but these are the things I find most helpful.  With all this, I have not yet found the sunshiny weather something to dread.  Something to manage, yes, but it is manageable.

Tan-tastic

Our week away has been truly splendid.  You can see from the above picture that my new mastectomy swimming costume was a triumph.  The same cannot be said for the footwear which looks like it would be more at home in Irish dancing than on a beach.  In fact, wearing slightly different footwear I managed to get my feet a little crispy.  As in burnt.  I had duly slathered myself in the aforementioned Neal’s Yard sun cream SPF 30, only my sandals rubs patches off.  Which I then stupidly forgot to reapply.  Stupid stupid stupid.

I have been more focused than usual on tanning during this trip.  I am generally not bothered, given that I have had fifty years on this earth of just burning.  However, in that time I have learnt a thing or two and, sandal incidents and stupidity aside, I generally know how to avoid burning now.  My usual colour is a shade warmer than deathly.  But just a shade.  Apart from my cheeks which always boast a ruddy glow.  However, given my impending date with the Poison Department (aka Chemo Unit), I fancied at least beginning the process with a reasonable tan.  Especially since all sun needs to be shunned unless painted in factor 50.  So I have embraced the opportunity for a bit of sun worship.

I will be feeding back to Neal’s Yard re their sun cream – I don’t know if I have had a dodgy batch or not, but everything, and I mean everything, that has come close to it or me while anointed has been heavily stained yellow.  I know that sun cream often stains clothing but this has been something else: my towels, my bed sheets (even after showering), my clothes and my beautiful swimming costume all now shades of yellow.  This does worry me regarding my tube of factor 50 at home as I will have to either chose my clothes very carefully, not wear it or buy some more sigh.

Anyway, in the middle of all this sunbathing, I have managed to end up with what will become the most stupid tan line in the history of stupid tan lines.  On the beach, after swimming, I tend to wear a bandanna to keep my hair off my face.  At some point I must have pulled it down slightly.  Not much.  Of course, the sun chose that moment to bless me with a nut brown complexion.  In an instant.  So I have a line.  And under other circumstances it would never be noticeable.  But given that my hair is about to fall out I am going to look more than a little ridiculous.  The Captain has offered to dust off his range of wood stains to colour match my scalp in anticipation.  Rude.

FEC-ing Sun!

*Updated 18th June – see bottom paragraph*

One of the less unpleasant side effects of the chemo regime I will be subjected to, is an increase in sensitivity to sunlight.  I have it on good authority that factor 50 is the SPF to go for and much to my surprise, this does not actually mean white emulsion.  In fact, I am rather pleased that I have ended up with one of the Independent’s best suncream recommendations for 2016!

I have bought Neals Yard Organics Lemongrass Moisturising Sun Lotion SPF 50 in readiness for those days I am up to sitting in the garden.  I have a large hat too.  I wanted Neals Yard because they do not use chemicals in any of their products that can disrupt or cause overproduction of oestrogen.  This is especially important to me as my cancer was/is oestrogen receptor positive meaning oestrogen feeds it.  Suncreams are particularly good at including chemicals that do this so I am choosing to avoid such products as much as possible.  I am gradually working through my toiletries and sifting out those that include harmful ingredients.  Nothing like locking the stable door after the horse has bolted.

More information on Neals Yard is here but this is a summary of what they avoid when making their products:

Update:

I am sorry to report that the Neals Yard Lemongrass Sun Lotion was something of a disaster.  Well, maybe this isn’t entirely fair as it worked brilliantly as sun protection and smelt fantastic.  However, everything, and I mean EVERYTHING that came into contact with it was stained a virulent yellow.  All suncreams stain a bit so the disclaimer on the packaging warning to keep out of contact with fabrics, did not unduly concern me.  Nothing could have prepared me for the amount of staining.  My lovely new (expensive) mastectomy swimsuit was ruined, so were several towels and some clothes.  It is fair to say that this product is not fit for purpose.  Unless you are a naturist.  With a fabric aversion.  In that case, it is the suncream for you.  In fairness to Neals Yard, I wrote and told them of my problems and they gave me a ‘good will’ payment of £75 which more than refunded the cost of my creams.  Since then I have ordered an SPF 30 from The Green People on the understanding that the jump from 30 to SPF 50 only affords a further 1% of sun protection.  Here’s hoping.