Half-life

Hormones

Today I saw the Doc again.  And as always it was a real pleasure.  I do love this man.  Officially, it was to review my lacy bones.  My DEXA scan of a few weeks ago showed that all is stable – neither worse nor better, which given the bone leaching properties of Aromatase Inhibitors is good news indeed.

Of course, a general review was undertaken and on being asked how I was, I promptly burst into tears.  Not my finest moment.  I have been really struggling with side effects from the Exemestane.  My sleep is rubbish.  I am woken several times a night by muscle cramps and joint pain.  The joint pain is so bad that there are days when it is hard to physically get out of bed.  Kneeling down is something I have been avoiding as much as possible because hauling myself back up again is extremely tricky.  I am hideously weepy (see above for classic example!) and the fatigue is overwhelming much of the time.  And everything has dried up.  And I mean EVERYTHING!  My skin, eyes (now need drops), vagina (thinking of renaming that the Sahara).

I have had some success in tackling many of these symptoms myself.  My joint pain has improved since I’ve been taking Glucosamine 1500mg and Chondrointin-Sulphate 1200mg a day based on this study. Thanks to Liz O’Riordan’s blog, I have now been prescribed Yes Vaginal Moisturiser which is a massive help.  However, despite this, things have remained pretty grim.  Since arriving back in our land based home, It has felt like I am living something of a half life, with fatigue, lack of sleep and joint pain controlling everything I do.

The Doc went through everything.  Having tackled my symptoms we then looked at my prognosis which given that I have had both surgery and chemotherapy is pretty good, despite an Oncotype Score of 28 and a grade 3 tumour on biopsy.  The hormonal therapy does make a difference, but there comes a point when quality of life has to be taken into consideration.  But I do not know how you say no to something that has a proven ability to elongate your life.

For now, the Doc has suggested I take a break.  My hormone therapy is to be packed up until after Christmas in the hope that I will get some respite from the relentlessness of hideosity I have been experiencing.  I will then see him in early January and will start on Tamoxifen, with a side order of Venlafaxine or Amitriptyline if necessary.

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Levels of Whelm

overwhelmed

Hello again.  Did you miss me?  You just knew that I could not shut up for long though, didn’t you?  It appears I need this blog more than I thought.  Recently I have read a couple of other blog posts (here and here) on post treatment life which greatly encouraged me.  I am not alone and that is really rather lovely.  Thank you Sue & Laura ❤

I have decided this Return to ‘Normal’ Life is overrated.  I seem to run better at the 2.3 miles per hour life on the canal afforded me.  Since arriving back on dry land exactly 2 weeks ago I have been brought face to face with just how knackering everyday life is.  Granted I have had my Mum with me since she has been recovering from cataract surgery.  And that has involved trips to and from Oopnorthshire a couple of times.  But even so.

Life post chemo/cancer treatment should not be about constantly avoiding one weepy outburst or another.  And yet that is what seems to be happening of late.  I am only ever one tissue away from becoming totally overwhelmed.  I know this means I am too tired but managing that is not something I am doing very well at.  Apologies to all and any who have been on the receiving end of one of my episodes.  I think, basically, I should not be allowed out.  Or allowed in.  I think I should probably be confined in a darkened room, though that is worryingly appealing …

Thanks to Exemestane, every night’s sleep is broken multiple times which makes me think I never sleep deeply.  Then again, it may not be the drugs, it may simply be good ol’ chemo fatigue.  I career from one obligation to another without ever really feeling that I cope with any of them.  I can control a certain amount of stuff, but not the relentlessness with which the unexpected occurs.  I seem to only have the energy to cope with a crawling hand to mouth existence when really I would like to soar.

One day, maybe, perhaps.

I should add: I have a friend.  He was receiving treatment for cancer a few years ago when I first met him.  He experienced all sorts of knackeredness for some time after his treatment ended.  This summer at an event we both attended, while I was snoozing in my bed, he was strutting his funky stuff all over the dance floor.  He is my Ray of Sunshine and gives me hope.

 

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

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!