Reflections

obscentities

Recovery is an odd business.  I am basically well.  Very well.  Gloriously, deliciously, delightfully well.  And I am revelling in that.  Ask me how I am and chances are I will reply with great enthusiasm that I.  Am.  Well.  Because I am.  Really.

However.

You just knew that was coming, didn’t you?  As time marches on I find more things that are not quite as they were.  Bits of me where chemo has left its mark.

I seem to have been left with permanent tinnitus.  I sleep now (when I sleep) with an audiobook playing to drown out the incessant noise I hear otherwise.  It is not all bad.  I am working my way through some fabulous tales and having a bedtime story told to me as I drop off is really rather pleasant.

I get very very tired.  I believe this may go on for some time.  I am fine, fine, fine.  And then I am so not.  My body seems to revolt with tiredness.  I not only stop sleeping, I become far too intimate with the toilet.  Not something that happened before.

My skin is very friable.  It tears easily.  It dries out more readily.  It becomes sore at the drop of a hat.

My internal thermostat is on the blink.  This may be down to my hormonal treatment, my exemestane, but it is not just hot flushes.  Which, frankly, are not that bad.  I become cold very quickly.  In temperatures that would not normally cause me to feel cold.  It is a little bit like permanently having the erratic thermostat associated with a viral infection with none of the poorliness.

I have muscle pain/weakness in my left shoulder & back where my mastectomy and reconstruction surgery took place.

On top of this, there are the muscle cramps and joint aches from the exemestane.  I have another four and half years of it so there is little to do but put up with these but they are not much fun.

So there you have the physical stuff.  But I think the worst moments are when the ol’ cancer demons come to call.  Whether it is the whispering voices that say it is returning; the flash backs to the grimmer parts of last year or unexpected glimpses of a different shape as I pass a mirror or see a reflection; all serve to remind me of what has been, what has changed and what could have happened.  It leads to a lot of mixed emotions that can be overwhelming.

Spending time away on our boat has been amazing therapy.  It has provided me with the opportunity to reflect, the time to grieve, the time to heal and the time to recuperate.  But I miss the talking one does when one is surrounded by people, by community, by family.  So I am hugely grateful that one of my best friends is coming to stay next week.  We have much to celebrate as she has just reached her five years post successful treatment for Non Hodgkins Lymphoma.

In the meantime, this poem has given me much solace.  It reminds me very much of my belovéd Psalms, in particular 23

The Peace of Wild Things

When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.

Wendell Berry

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Back to Work

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This weekend marked something of a landmark.  It was the first weekend that the Captain and I had booked in to trade at a canal event this year.  When we sent off the forms it was unclear just how much I would be able to do, given that it was still fairly close to my surgery.  However, I am pleased to report, as returns to work go, it was a triumph.

I did need to have a few nap-lets during each of the three trading days.  And it is true, I did have a minor meltdown as we came to set up for our first day.  But it felt really good to be back and doing something so normal.

We launched our Not Second Rate Raspberry & Rhubarb Jam in support of Breast Cancer Care’s Secondary Not Second Rate campaign and it went down a storm.  Even the lovely Richard Parry, CEO of the Canal & Rivers Trust, bought a jar and went away clutching his Taking Care of Your Breasts leaflet.  Two pounds from every jar we sell goes straight to Breast Cancer Care and at the end of the year, I will tot it up and announce the amount raised on our website & Facebook pages.

Finally, the Captain managed to make it into the local paper.  If you want to read more, see here.  I think I may need to remind him who’s business this is … 😉

New pills please!

new prescription

Yesterday found me once more at the Breast Clinic.  My Letrozole holiday was over and it was time to shake the sand out of the hormonal sandals and review where we were at.  Brainy Spice was as fab as ever.  The news in was that all my muscle cramps have vanished but my hips are still stiff.  It was enough of an improvement for Brainy Spice to suggest a change.  So I will be starting on Exemestane just as soon as the pharmacy has made up my prescription.  As with all these drugs, the side effects are very jolly sounding but needs must so I am hoping to be one of the lucky ones.

In other news, my relative quiet on here has been reflective of sheer busyness elsewhere.  I am recovering with great alacrity and feeling better all the time.  My newly trimmed rack is simply marvellous and I am loving the lack of shoulder and back ache!  The Captain and I are poised to take to the waters next week and will be peddling our wares at a canal near you very soon.  Expect photos of our new Breast Cancer Care jam to follow in another post.

Otherwise, I think you can take the infrequency of my posts to be very good news indeed.  Life is happening.  And it is good.

Happy Easter!

So long, 2016!

new-year

It was quite a year.  And one that I am not alone in being glad to see the back of.  So 2017 dawns, grey and rainy, and I greet it full of snot and with a hacking cough.  My plans for the new uber fit me are temporarily on hold.  But I shall return to them.

My efforts to date have seen me shed all of my chemo weight – hurrah!  The Captain has given me a fitbit for Christmas so my new obsession is going to be increasing my steps and activity levels.  I still have a fair way to go before I reach my healthy BMI range but I will get there.  This stupid cold is not helping.  My crappy immune system means I am picking up pretty much everything going.  I only got rid of my last cold the week before Christmas. But at least I did not succumb while going through treatment which would have been far worse.

Christmas itself was delightful.  I pretty much grinned the whole time.  To be fit and well enough to be with family and celebrate was so special.  The Captain and I have even begun to plan our boating itinerary for this year.  And more to the point, I am even beginning to believe it may actually happen!

Thank you to everyone who made 2016 bearable.  It is never going down as my favourite year, but it is definitely the year when I realised how loved I was.  And that is a precious gift, my friends.  Thank you x

Travelling in Style

Boat

We have gone boating.  We have shunned the land.  We are at one with narrowboat.  So at one that the current deluge is doing nothing to dampen our spirits.  I say ‘we’ … I am currently draped full length across our very comfortable sofa while the Captain mans the helm.  It is very English summer holiday weather: grey, drizzly, a tad chilly but obviously we are dressed in tee shirts and shorts.  On the towpath, pedestrians huddle under bridges or hurry by head down in brisk fashion.  Cyclists spray dog walkers with mud as they hurtle past.  Fishermen hunker down among the reeds with only imaginative dreams to accompany them No, really, it was THIS big!

Beyond the towpath are hedgerows packed with pink rosebay willow herb, bindweed trumpeting her flowers and creamy meadowsweet vying for space.  Honeysuckle spills over hedges.  Tall stinging nettles grow up to greet low hanging hawthorn, ragwort splashes sunshine colour next to cow parsley bobbing under raindrops.  Along the water’s edge red clover reaches down into the canal,  greater celandine peeps out of the brickwork, graceful reedmace stretches skywards.  Then carpets of yellow water lilies are paddled through by families of ducks.  A solitary heron stands sentinel.  Another narrowboat is moored, its roof lined with winter timber.

All this I see through the soft focus of my rain dappled window as I sip my rooibos earl grey from its china mug.  The woodburner squats comfortingly in the corner of the cabin.  It is not lit but still creates an illusion of warmth to the room.  Our night will be spent near a pub where we will enjoy the food and possibly a bevy or two.  And then our watery home will rock us to sleep.

You can see the appeal.

Gone Boating – Day 13

Hatton Flight BF1

I could almost have Nina Simone singing alongside me today because once again I’m feeling good!  It is true that I am more tired and I did not sleep brilliantly last night so I’m looking like I could pack for a week in the bags under my eyes.  However, since nobody is looking at them, because they are all transfixed by my baldness, I can get away with it.  The policy of loud lippy is definitely paying off.  I have had so many compliments.  I do not even care if it they are said with sympathy.  I am just happy to have them.

Today I took my naked head out for a test drive.  We had an appointment with a shrink to discuss the whereabouts of my marbles.  I suspect if we do not find them at some point, she may practise her head shrinking powers.  Which could ruin my look entirely.  It probably comes as no surprise that I have been having trouble locating my marbles.  What may be a surprise is that I have any left whatsoever.  This was my third trip to Ms Shrinker.  And I like her.  I am always slightly concerned that I may trip over her at some point and crush her entirely.  For she is tiny.  Kylie is of Amazonian stature in comparison.  Having a diagnosis of cancer is mad, so I say take all the help you can get.  Be bonkers enough to get a psychology referral.  There is no shame in it and so far, my tiny friend has proved very helpful.  She has to be good.  She liked my head.  So obviously a woman of taste and discernment.  Even if she is lacking in the height department.

Following this, the Captain and I have shunned dry land, untied the ropes and are chugging along the Curly Wyrley for a night at the pub.  It is almost as if normality has been resumed.