All posts by wendoxford

About wendoxford

I have inflammatory breast cancer which is metastatic. I also have have Type 1 diabetes and a philandering ex-husband to my name. When not dealing with my health problems; fallout from my ex-husband's affair with my close friend whilst I lost my hair from chemo and other betrayals , I am housekeeper to 2 cats with attitude. I love all my family and friends, my reading group, The Archers, fish and chips, the smell of the sea and sound of the seagulls, drinking Veuve Cliquot, singing in the car, my home as well as travelling. Still wondering whether visiting every US state before my demise is too big or daft an ambition I can usually be found in a book.

57, and not planning to be out…

It is now almost 4 years since I thought I had only those 4 years and so I have been celebrating a birthday. I don’t care what age I am, whatever the age, it is truly something to enjoy. Every year feels like a bonus and I am happy that I am actually here to get older.

  • Dealing with each day as if it is my last has engendered an attitude of awareness of what makes me tick, big or small.
  • I am thinking myself “well”
  • Physical travelling has been indulged – in the past 4 years I have been on so many adventures and am loving it…Crete, Israel, Jordan, Deep South US, Salzburg, Romania, Bulgaria, Croatia, Serbia, Hungary, St Petersburg, Dublin, Saint Lucia as well as Hay-on-Wye, Brighton, Bath, Manchester, Harrogate, Liverpool.
  • Not sweating the trips or outings I have had to cancel
  • Perhaps more importantly I have also travelled from utter despair to contentment, albeit taking a rather kinked? kinky? tangential? route
  • Living life vicariously is not living at all
  • Family and friends (ancient & modern) have made the world a better place for me
  • I have reframed the challenges I want to undertake and have, finally, accepted that some you win, some you lose!
  • I also know how easily tired I get and am learning (or, more truthfully, am on the learning curve for) how to stop/opt out/cancel/take time out when head says yes and body says no.
  • Indulging my creative and academic sides through writing, art, silversmithing, photography, studying again….and on a different level altogether – nail art, taxidermy…the list keeps on growing
  • My new benchmarks for living – serendipity, psychotherapy, reading and laughing whilst climbing every mountain (as it were!)
  • I am not planning on dying with any regrets of things not done/achieved
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Perhaps, perhaps, perhaps….

I had the treatment of group B of these women. Looks like I might be lucky….That said, trial was for regular breast cancer, early diagnosis and I was late and this was not trialled for my rarer form of inflammatory breast cancer

However….The Texas Programme for Inflammatory Breast Cancer issued this (rather lengthy) statement, which I have shortened.

Those of you who are active on social media may have noticed that this week, Genentech announced that their ongoing phase 3 trial of Pertuzumab (Perjeta) along with Trastuzumab (Herceptin) and chemotherapy has reached its primary endpoint (https://www.gene.com/…/phase-iii-aphinity-study-shows-genen…). The press release notes that the results would be shared at a major medical conference this year. We’d like to proactively answer some questions about the impact of these results on IBC care with this post.

Trial design:
Patient population: Early breast cancer patients (IBC excluded) with HER2+ tumors, removed by surgery and who are candidates for adjuvant chemotherapy with a Trastuzumab-containing regimen.

Study arms: Physicians choice of 3 acceptable standard types of chemotherapy along with Trastuzumab for everyone for 6-8 cycles, followed by Trastuzumab to complete 1 year. 50% of patients received Pertuzumab in addition to this for the whole year and the rest received a placebo.

Take-home for IBC patients: All we know from the press-release so far is that the result is positive, but we don’t know the details. These data have only a limited impact on how we approach IBC care due to the fact that the current standard of care for IBC is neoadjuvant (pre-surgical) chemotherapy. The FDA approval label for Pertuzumab specifically includes IBC and we routinely use Pertuzumab for our HER2+ IBC patients.

Inflammatory breast cancer is treated with neoadjuvant chemotherapy – chemo first, surgery/radiotherapy afterwards….

So…perhaps, perhaps, perhaps (do click to hear Doris!)

 

Stoned

4 therapists (so far). One opinion. One reaction – all reduced to laughter as none had encountered such a knotty specimen as I presented. The unknotting work has begun. Neck and back combo done outdoors in a warm breeze. Ayurveda next, a practice which combines preventive and palliative care. Warm oils were drizzled over me as I was kneaded by 4 hands in a 75 minute  Abhyanga massage. 

A glutton for punishment I progressed to a deep tissue massage, a very deep tissue workout. An experience so pain filled,  I yelped and whined but Natasha persuaded me to go with it, she thinks she can fix me. Even my feet caused hilarity  in the final session of the day because they were so rigid and tense,  my lovely practitioner couldnt take control. 

Hot stones….Hot stones may just be the answer. Some bit of the knot seems to have eased and the stoner therapist struggled to get me to leave.

Whilst my brain may finally be edging toward recovery mode, my stress has taken root, like burs in neck, shoulders, thighs, calves AND feet. I notice that after these treatments my back is bruised all over. Royally bruised I should say – in a very fetching shade of purple. Now looking forward to Chavutti and more deep tissue “work” …Chavutti, I gather, involves someone walking along my spine whilst hanging onto a rope. Apparently I will end up feeling taller as my spine is ironed out. I am suspending my cynical side and, for the time being, I believe!

As I enjoyed/endured I focused (in a mindful kinda way) on how wonderful it was to be touched again. Cancer is such a  journey of being handled. I hadn’t clocked how much this other handling was missing from my life. Maybe some of the tears were about loss and re – connecting with a world of loving people. As my head was massaged and my hair stroked I seemed to recall a softer version of myself bubbling up. Maybe I can start to bring this less brittle person back, I can hope…

 My other thought, as my feet were indulged, was the known reaction of my, now dead, friend. She was so averse to feet touching, that, even with 2 dislocated shoulders, nobody was allowed to cut her toenails or even approach them. She would have shut her ears and started a loud LA LA LA refrain when I tried to tell her about it. Not that it would have stopped me.

Do we want it darker?

The past week seems to have cast a lot of shadows, but not just for me. Feeling rather like the world has gone crazy (and indeed it has) but I am becoming more resigned to the fact that it is part of a cycle for which debate and engagement is the appropriate response. A friend, yesterday, suggested that spouting off in an echo chamber was useless and that we need to return to the days of talking with the very people whose views differ from our own. We need to learn/re-learn to debate our position rationally whilst also actively listening to other opinions.

Political blindsiding has not been all…I seem to have been dragged back (with some token kicking and screaming) into the world of being a “patient” again. Despite being what I think of as a hospital regular, stuff has changed in my absence. New scanner (with a different voice) plus the facility to watch movies, not that the staff have learned that part yet! Sadly still the same dye injected into veins that makes my mouth taste metallic with the added bonus of the “warm” (not fuzzy) feeling as if you have become incontinent.Cancer! – such a riot!

All this week’s medical appointments seem to have ended up focusing on my heart function. I am unsure why and asked if my blood tests had been worrying. They hadn’t. I asked if there were any other indicators that were awry. There weren’t. Nonetheless 3 doctors in 4 days does make you wonder. Maybe it is just something to add to my flailing round in the dark state. Still, more doctors, more tests, more clinics over next 2 weeks so maybe something (benign) will emerge.

…and just to throw something else into the mix of the darkness theme, our cat has gone blind.

But I have just discovered a bright side. Glitter grout. Who knew?

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Ask not for whom the bell tolls…

Re-living fractured, bruised yet resilient Eastern Europe – Bucharest to Budapest (with an off-piste trip to Black Sea)…enhanced by the company of John Simpson, Martin Bell and Nick Thorpe. So much history, currency, perspectives from the 5 countries. I may even have gained some understanding of the populations and border movements better

Back to the medical coalface now…bare minimum of appointments to enable continuing insurance. 2 hospitals, 3 appointments this week and then 2 the following week…

On my trip someone had to visit a Bulgarian hospital #countingmyselflucky

YOLO

…apparently YOLO is what I need to embrace, am embracing!….so I am trying to replace replacing anxiety with a sense of adventure and running with it…Next stop Bucharest. Halloween with Vlad the Impaler was not the plan but I am hoping to find the kitsch element.

After all. what could possibly go wrong, other than getting my acronyms wrong?

 

Memory Foam

I am going to attempt another adventure this week. A trip planned in 1991 so, I figure it is  about time I got round to it, albeit it, in a different way.

But what a weird thing memory is, and, following on from the swathes of school memories, I seem to be thrashing myself out of a chrysalis of disorder into more senior moments of re-ordering my past.

I find that there are permanent furrows I have ploughed into the memory foam. I am less belligerent about them these days and even willingly nestle into acceptance and gratitude with them:

  • friendship
  • family
  • sickness (despite 16 blood tests this week…and a flu jab)
  • health

and then the transient yet recurrent stuff:

  • good choices
  • bad choices
  • completely off the wall choices
  • learning to make my own choices

….which has led me, as it often does, to Dr Seuss…that unexpected, fountain of knowledge and his fabulous logorrhea.

“You have brains in your head.

You have feet in your shoes.

You can steer yourself any direction you choose.

You’re on your own.

And you know what you know.

And YOU are the one who’ll decide where to go…”

“Simple it’s not, I’m afraid you will find, for a mind maker-upper to make up his  her mind”

Couldn’t have put it better…so off I go, in an easterly direction!

Ladies all…a pride of lissom loudmouths

Reunited friends. What a lot to catch up on. 40 years of life’s diverse routes which brought 33 of us (our school year group) back to Harrogate, where it felt like it had all started. We have all had our share of successes, failures and tragedies. We had a Pandora’s Box of memories which when we started to put them together created a far better narrative of schooldays than I had been able to assemble for myself over the years. We also found a bounty of black holes and events I, for one, could not believe I possibly attended even with photographic evidence.  And, who knew, that when we planned what we would do when we got into the real world, that we would be so adept at clocking up such an extraordinary number of ex-husbands?

So it has been back to normal life again this week, pickling cucumbers and preserving lemons, which is my sort of “normal”. My other “normal” is also about to kick in, with a bonanza batch of blood tests in the spirit of attempting to kill three birds with one stone. None of them quite at the right time for the different clinic appointments but experience of these endless check-ups tells me that it will be “fine” ( a pithy “fine perhaps…but that’s OK)…and I know I have to chase up scans that should have been done by now, but I haven’t.

Going forwards, backwards

So…off on another adventure. My memory is that I am going to the coldest place I have, to date, encountered, which makes preparation and packing challenging. The reality is that going back may be more demanding than the weather conditions!

My date is a self-styled school reunion in Harrogate. Many of my school mates have not crossed my path for 40 years, others have touched me at various points and others have remained as much a part of my life as they were all those years ago. “We” have found 50…lost 13, aware of 2 deaths and forgotten…heck, who knows….However 33 of us will be “back” together this weekend with no plans (on my part) to venture anywhere near the school.

I quite liked the response of one of my yeargroup (who I last remember deeply in love with David Cassidy) – when I asked what she had been doing for the past 40 years, her response was

“Making mess and tidying up”

Guess that may dominate all catch-up…it seems that, between us, we have an outrageous number of husbands and misdemeanours under the bridge since we last convened! So pleased that, at first glance, we appear to have fulfilled the potential of that elite education….

1977

lancaster-1977

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