Numbers game

So tomorrow is a big day for us - we're back to hospital for more chemo but also for blood results which will tell us how Man has responded to his Round 1. 

Paraprotein levels measure the amount of myeloma cells in his body (as I understand it.) Normal is 0. At diagnosis Man's were at 58 which is quite high. Between us we're having a friendly wager as to where the levels are now after having had initial treatment. Indicators suggest that they've done down, ie the VRD* regime is kicking ass. I'm sure it's in the low 20s, such is my optimism, but hubby questioned "What if they've gone up?" I told him they won't! 

I've never had experience of anything cancery until this year but I'm starting to understand cancer patients' and families' fear, apprehension, anxiety at waiting for the all important results (which have to be monitored monthly now, perhaps for many years.) I'm not a numbers person but it seems that our lives, our limitations and our expectations, are now being driven by them.   

Wish us luck, thinking of you all :-) 

*VRD - Velcade, Revlimid and Dexamethasone 

Dogs

So a few years ago I worked as a viewing agent, meaning I got to nosey around people's houses for a monetary reward. I was warned about a particular house visit that I was going to host - apparently the dog that lived there was as big as a horse. The advice was not exaggerated. I came face to face with Saffron, a three-foot-at-the-shoulder Irish wolfhound and fell in love immediately. I hasten to add, I'm not a dog person, never previously owned one, but her grace captivated me. I soon set to work on Man registering my interest in getting an Irish. I didn't get one, probably because they are so rare, so huge and so expensive. BUT Man relented and we are now proud parents to a bouncy, blonde golden retriever. I named her Macy-May which was my nod to NYC and also to my mum's birth month.

Moo-Moo is affectionate and loyal. She's calming, funny and always reliable. She lives in the moment and doesn't appear to harbour any bad feelings. She's happiest being with her humans and is just so grateful for life.  We can't imagine our home without her.

For a 'retriever' she's a bit shit. She can't swim, despite having been bred with partial webbed paws, and she's never retrieved a thing in her life! Her jaw is wonky and she sometimes smells. But her passion for life shines through and we've learnt a lot from her. Dogs just somehow exude a wonderlust, a simple life that involves food, exercise and lots of cuddles. So that's it, the most important things are right here in front of us.

Man has been in pain for a few days. It's difficult for him to stand from a sitting position and I can tell that he's fed up. Having seen Dr L today, our fears are lessened as she announced that the blood results from last week are looking good - ie, globulin levels are dramatically reduced which indicates that he's responding well to treatment (going from 88 to an almost normal level of 37). He hasn't lost nor gained weight (probably something to do with his beloved Snickers tasting of cardboard), BP and temp are good and there are no infection markers.

But, that bloody Zometa - the bone growth drug appears to be ragging his pelvis and in an ironic way in that the healing and growth of bone which it promotes also incites pain which is somewhat crippling.

His mood day - and one day I'll get him to write this himself - is 'upbeat' - the pain today is apparently pay off for being with Jack at Lydden Hill race track yesterday. See, enjoying the moment, like a silly retriever that runs bat shit crazy around the woods and then tires herself out for 24 hours.

Quote of the day from the Man - "Bloody aching, bloody hips, bloody bollocks."

And yet the tongue is out, panting with contentment and awaiting to be fed, and that's not just the dog!

The Donne

Those of you who know me personally may have heard me get excited when it comes to one of the finest playwrights ever lived, good old William Shakespeare. His ridiculously entertaining and captivating plays are works of which to be marvelled and, formerly, his poems are the stuff of thought provoking paradox and rhetoric. We (I) even quoted him on our wedding invites and we married with the meleody that Craig Armstrong wrote for Romeo + Juliet (https://www.youtube.com/watch?v=Je3KyWWW8pA) I don't claim to know any more about Shakey other than what I've learnt in a couple of uni modules and from being in the classroom this past year with very talented English teaching colleagues. I've been on school trips to the Bard's office and, a couple of years ago, Man bought us tickets for the Globe theatre for us to watch 'As you like it', a brilliant comedy that we both laughed out loud at. Shakespeare 1-Man 0. Man even bought us cushions so we could pretend to be Elizabethan gentry 😊

Another guy who was writing at the same time as Shakey was John Donne; his infamous line 'No man is an island' is now household slang for the fundamental need for community.  Since my blog has gone public, Man has been inundated with messages of support and love from circles of people from his past and his present, professional and personal. And whilst most of the time we believe that we are independent and capable of steering our own ship, Donne's line hits us with the notion that we are anything but.  History has shown us that humans apparently cannot thrive or grow without others' experiences and support - individually we are mere pieces of the sum of life. If we were to live as an island we would surely succumb to an emotional famine, a drought of insignificance and endless rounds and rounds of circles only to eventually shrivel and fade away. 

And yet a biggie like cancer (the word can kiss my ass) brings out the BEST in humans, no doubt. I could write a book with all of the supportive messages and heartfelt phone calls that my husband has received. Mother Nature works mysteriously and yet - paradoxidly - in an obvious way. We all want to survive. We are all part of this homosapien network that has evolved over hundreds of thousands of years with the sole purpose to cling on to this inextricable matrix we call life. No man is on his own, unless he wants to be. My husband has always been sociable, personable, affable. He's ready to assist, doesn't question his friends' requests and has always looked on the bright side of (Brian's) life. And now he's reaping back - his network, ie you! are keeping him afloat, keeping him focused, keeping his life one of sincerity and earnest. We thank you, sincerely for your love.  Who wants to be an island anyway?! 

'We that are true lovers run into strange capers!'

- WS 

Sorry hubby for the Shakespeare references but I can't write without using his words, afterall, we use them every day 😉

Round 2, ding ding

Wow, three days in France make a lot of difference! Man and I drove to Vendee with our best Scots and lived in a refurbed farmhouse in between corn fields and a cow field, bliss. Long straight roads led us to long, warm days full of food, laughs and exploration. And boy, did we eat well. Galetts are my new favourite for lunch and breakfast was usually a cheese-fest.

On medical orders, Man isn't allowed to travel, certainly not by air, but a cheeky ferry and a days' drive equated to popping north of our own border so we took our chances. All meds were taken with extra penicillin for precaution on account of Man getting a sore throat with a threatening cold. Fortunately his temperature remained steady and the anti-Bs weren't required (although he took his prescribed three other types!)

Other than the meds, the only other cancery thing we took was Man's anti-gravity chair and goodness, he used it and some! On it, Man achieves the most comfortable positions as weight is evenly distributed throughout his body and pressure is taken off his pelvis. And yes, we even took the trusty chair to the sandy beach at Saint Gilles where he plugged in music to his ears and viewed the Atlantic ocean and her hunky surfing instructors from a 45 degree angle.

On day 1, it was decided that the women and children would venture out to get supplies from a supermarket. A feat in itself and we crossed many miles before we found a half-hearted shop. At one point I felt certain I could see the Eiffel Tower such was the length of our outing. The Scottish girls made their requests for favoured French treats and Man jokingly requested a 'new pelvis'. We said that should we come across a Lidl I'm sure we'd find one in the crazy centre aisle. Pink or blue? Plastic or durable ceramic? As it is, we'll settle for Zometa to do its crazy bone making thing.

Having abandoned our friends at the farmhouse to fend for themselves with sweetcorn stolen from said fields, we set sail, arrived home and bounced straight into Round 2 of chemo - on Man's son's birthday. Birthdays are becoming significant as it was on his mum's birthday that he was given the myeloma diagnosis, so a birthday bonus for everyone.

Back at Beckett's ward this morning, we were greeted with the usual steadfast smiles and professionalism from our oncology nurses. God, they're good. Their patience, experience, humour and warmth make the visits all that more humane. True to form, Man drank copious amounts of 'free' coffee whilst he sat in his recliner whilst the drugs were dripped into his arm. But ever the attention seeker, he also logged on to a voice conference call where his work colleagues acted surprised to hear from him. Hey, it's only chemo and the world still turns round right?!

Symptom-wise, Man lost his sense of taste, has been constipated and the dex is not forgiving when it comes to slumber. But, with a diagnosis as his, he's almost grateful that they're all he's suffered. Mobility has slowed down and I put that down to the Zometa attacking the bones. I say attacking, I mean strengthening, of which the effects must surely be felt.

We see Dr L on Tuesday (the private sector doesn't work on Bank holidays) and hopefully she'll give us the good news that para protein levels in Man's blood have gone down again. Two months ago they were at 58. After the first course of dex they went down to 34. I'm hopeful they've done down further and that Man's PP levels will meet mine at 0.

In the meantime, he's gone out for a cheeky beer with a very cherished pal who misses his riding buddy. Maybe frequenting local establishments will be the new riding!

Messing around on lac du Jaunay

Band wagon

If EVER there was a more apt phrase to etimpise the news about Aretha this week it would be 'bandwagon'. Back in the day, a bandwagon was a device that took musicians and circus folk all around the counties, enabling them to showcase their creative skills. I'm jumping firmly on that shiz!

I grew up in a household led by a musician. Music, melody and artistry is subjective. But I did learn from an early age that good music was to be appreciated. In the 80s our entertainment was vinyl and my dad's collection was extensive - from Pink Floyd to Mozart. I'm forever grateful.

The news that Aretha Franklin has passed [to an arguably better side] has nudged many people's curiosity, not least my own. I asked Siri (modern day Oracle) to play me her songs. For two days I've had her sweet, amazing, soulful voice coursing through my sound-waves at home. But here's what is evident early on - many of Aretha's vocals are recordings of other artists' songs, namely Ottis Reading, Gloria Ganor, Marvin Gaye. I've even heard a fucking-fantastic version of Adele's 'Rolling in the Deep', a kid from Tottenham witnessed a goddess singing her melody and lyrics. Beyonce should be eternally grateful for Aretha's nod to Survivor and I just hope Prince heard her 'Nothing compares to you' in the most jazziest jazz style ever.

So I guess what I'm getting at is this: no matter your talent, your calling, your autonomy, you will always learn from others. We can all take tunes from others' lives and experiences and make them our own. Anyone's who's read about myeloma will be familiar with the word 'individual'. And it's true; each patient feels their experience very differently from others. Different regimes, blood counts and sarcomas separate each patient from the next. Therefore, we all run our race. A brutal marathon that takes courage and acceptance. My husband has both in abundance.

We secured ferry tickets for France, sailing tomorrow. We're jumping on our friends' holibob, with their invitation, but we're pleased for it. We'll savour the experience, we'll be gratuitous for the opportunity and we'll enjoy it singing our own song.

Bring on The France, time to forget about chemo, scans and regimes. Fun in the sun, here we come!

'When she sings your songs, she takes them and don't give them back.' Stevie Wonder speaking about Aretha, yet articulating my sentiment about life. 

Memento mori

So Chemo Cycle 1 is complete 😃 A well earned week off for my man but I just can't believe the irony that the treatment is classed as 'cycles'. From now on, I'll refer to them as 'rounds'. Like a boxer, using every second to prove his physicality, diligence and defensive skills. Ding bloody ding.

Hubby has been in discomfort this week. It might stem from having an active weekend with his boys. They attended Brands Hatch for the German Touring Car races, quality time with them but not so forgiving on his pelvis. Still, he's reported to be feeling much better today. I don't know how much of the tumour gives him discomfort and how much the meds are affecting him. All we know is that we're on this one-way path and have to ride it and overtake obstacles whenever we can.

We have plans to spend a few days in France with some of our very best friends during the chemo break. Man is not supposed to travel but we are literally within driving distance of home so we're flipping the bird to myeloma and are going to spend time with our favourite Scottish people for laughs, hugs and great food. Bread and cheese, here we come!

I read the following on Monday, I want to share with anyone reading and everyone who feels challenged:

'To those living life without consideration, take time to appreciate those closest...we can't all do it alone. ...stop being a dickhead, cherish the ones that go out of their way to speak to you and ask you if your day was ok...Don't be careless, everyone's been through shit...turn the negative into positive, push through and be something they never thought you'd be. 

If I could have something to remember me by it would be this: forget your past troubles, appreciate the present and DON'T anticipate the future. Live and LOVE every day as it comes, life's too short to get caught up and bitter...live life without nonsense and drama.'

TW, aged 22. Died of a broken heart but left us with the wisest words. Be at peace xxx

Rain

Yesterday after chemo, Man felt well enough to drive his eldest to Shoreham (Dex is a wonderful thing!). And as much as I wanted to see inside a airline cockpit simulator, I didn't want to invade father/son time and so I toddled into Canterbury for some me-time. It was ridiculously busy, puddles everywhere and the rain was relentless. After wandering around a couple of clothes shops I conceded that I wouldn't buy any more clothes until I'd lost my holiday (Christmas!) weight. I promptly went and consoled myself with a fat sandwich and coffee 😄

Waiting for my bus home, I joined others under the shelter, with soaking feet and the wind whipping my hair around. Boarding the bus, I had to scramble around in the depths of my bag for the change that the driver was patiently waiting for. A queue of impatient older ladies formed behind me, stating how wet they were getting. All eyes were glaring at me for making their journey home uncomfortable. I suggested to the driver that he serve them before me whilst I looked for my final 20p as moans and complaints about the rain became ever more audible.  Weirdly, he just fixed his eyes on me and gave me a wry smile. He was on my team. As my ticket was finally being printed, I looked back at the queue and thought 'Stop bloody whinging. You can stand, you can walk, you've obviously led a longer life than many and yes, you can feel the rain. Aren't you lucky?'

There's good luck and there's bad luck but mostly luck is shades of grey. Luck, I feel, is how you perceive it.  Something so sad or traumatic will always bring out the best in people, if your eyes are open.  It's unfortunate that our lives now harbour a cancer diagnosis but yesterday Man said "I'm so lucky".

We take our lives for granted until we are faced with not having one or not living the way we'd planned to. Mental strength is not about mind over matter, rather it's being mindful with eyes wide open. Sure, cancer sucks but it also sharpens up the good stuff: friends, time, good food and music, flowers and all that jazz. Hubby now reads actual books (I've never known him to pick one up despite all my keen suggestions) and he savours whole food. He walks when he can and spends quality time with his boys. He's being treated by a top team and we don't have any real money worries just yet.  His blood results are good, he doesn't have any real side effects of chemo yet (well nothing that a little Senna won't sort out!). We live on the doorstep of farmland and woods, a short distance from beautiful beaches and all our boys are healthy. How can we be mad with the world, it's bloody great!

'Staying positive doesn't mean you're happy all the time. It means that even on hard days you know that there are better ones coming'.

Anew

Myeloma is a blood cancer. It affects the plasma cells within the bone marrow. There is no rhyme or reason as to why someone should develop it and it's uncommon in people under the age of 70. Currently, there is no cure.

Within days of my husband's diagnosis, we were sitting in a rather dingy consulting room nervous and afraid. The doctor was a young man, softly spoken who did not exude confidence in either what he was saying or what he thought the prognosis would be. Also in the room was a chatty, personable Irish nurse who smiled a lot. She made us smile too. After taking lots of bloods from Man's arm, we were then directed to the haematologist consultant, Dr L. It was she who showed us the scan imagery and explained the extent of the damage that the myeloma had already caused. A huge tumour was not only growing in Man's pelvis but was also eating it. In a nutshell, half of is pelvis was missing. It was a miracle he was walking.

Dazed days and sleepless nights led us to a bone specialist, Mr M, again, another smiley friendly Irish face. It had been swiftly discovered that Man was eligible to take advantage of his employers' medical insurance which led us to these fine consultants. Endless bloods, scans, biopsies, paperwork and appointments guided our medical team to be able to offer the best care that could be offered. Man was immediately put on a dose of dexamethasone - a ridiculously strong steroid which started to shrink the tumour and took pressure of his spinal cord. It worked almost immediately and Man's pain subsided.

But dex wasn't going to be enough. Whilst Man battled with missing out on his annual trip to the Alps with his friends, Dr L put together a chemo regime.

"No riding". Words that Man could not comprehend. He was/is a very keen cyclist and it's the sole cause of his fitness and lean, strong legs.
"But I have an Alps trip booked, could I start chemo after that?" implored Man.
"I do not recommend. I anticipate that if you continue to ride you will be in a wheelchair for the rest of your life".
He relented and I witnessed how hard he took this news.

Chemo started. A course of Zometa was dripped into his veins to help rebuild bone growth. Velcade was injected to stop the cancer cells. Revlimid to be taken every evening to assist Man's immune system. The nurses were wonderful, the coffee good and spirits were high. We were sent off after the first session with a bag of goodies: blood thinners, anti-sickness, calcium tablets, tummy settlers, kidney protectors and three types of anti-biotics. Injections to be twice a week at the hospital and a very strict tablet regime started at home. The process had begun.

Meanwhile, Man sat in his anti-gravity chair in the sun developing a very envious tan. He continued to work from home whilst receiving supportive messages from his fabulous friends in the Alps. Their frequent messages made him smile as he still felt part of the gang, and yet I could see the sadness that he felt about his body letting him down, about the very riding he loved so much had contributed to his pelvis being fractured and dissolved. Now it was time to say 'life's not fair'.

In the space of 6 weeks, my husband's life turned upside down. Some of it painful, some of it frustrating but most of it filled with love and support. Friends have stepped up in a way we couldn't have imagined. They make life worthwhile, they are the laughs, they are the daily positives. Man has said that he's 'happy'. By this I imagine it's because he's experiencing life to the fullest, feeling every emotion and feeling grateful to be. It's hard to wake up to find your husband in the garden, been kept awake by steroids, struggling to bend, stand, walk. BUT we do what we do because we can. And he will again one day.

A journey

After nine years of procrastinating, my gorgeous man proposed marriage to me. We were 'second time arounders' and between us had a house, a (redundant) bachelor pad, five teenage boys and a cat. To all appearances, we had a family home and were a fully functioning team, albeit suffering struggles that children can bring. We were in love, feisty, shared the good things in life and, quite frankly, I wanted to cement the union with rings and a pretty dress. More importantly I believe in marriage; it tells the world that you are in the long haul forever, good, bad and ugly. And so, on Christmas Eve 2015 my Man took me to the venue of our first date and surprised me completely by producing a ring. I cried as he worked his way through a speech he had prepared. Afterwards, I wish my nail polish wasn't so chipped!

We married 18 months later, at a palace on the River Medway with our closest friends and family. We (I) chose music for the service that was uniquely personal to us and afterwards we took our guests for a boat cruise with fizz. Celebrations continued at our local pub where we had previously celebrated birthdays, Valentines days and Mother's days. It was perfect, topped off with a road trip to the Italian lakes.

Wedded life came easy; it felt different to having just lived together. Better different, committed, caring, special and warmer. Families now united, the romance was easy to see. Even though I fiercely held on to my maiden name, I was now my Man's wife and it felt like the punctuation that our relationship had longed for.

For ease, we had bought a new build house. Both of us worked full time and a ready purpose home made easy living for our large brood. Neither of us are particularly into interior design - all we need is a few sight and sound gadgets and a functioning kitchen. Whilst Man developed his cave in the garage surrounded by bikes and their paraphernalia, my attention turned to our little garden. A square patch of scratchy grass has developed into established shrubs and pretty flowers with a bit of landscaping completed by Man's own hands. Some of the plants had come with me from my previous home and were nearly 30 years old! I lovingly care for these growing miracles, sheltering them from the wind that is so prevalent up in the high village where we live. Fences became covered with hydrangeas and jasmine, roses and grape vines. The lawn is still patchy thanks mainly to the golden retriever who uses it as a loo but we forgive her. She is part of our family and the garden is hers too.

In Spring this year, we had many coffees on the patio, admiring how pretty and settled the garden looked. My husband commented that had he been left to the garden it would still be a square patch of scrub and he greatly appreciated the time and planning I'd put into creating our outdoor living room.

"But there's a gap by the fence" I noted one day. "We need a tree for more structure".

So off we popped on a very warm April afternoon to our local garden centre. After an hour, literally, of um-ing and ar-ing we selected a lime-leaved locust tree. I drew back the sunroof of my teeny car and drove the tree home sticking mostly out of the top! My husband dug a hole and we planted little locust and admired our choice. Weirdly, the tree felt like the missing piece from our home. Trees grow roots so strong and I had wanted to mirror the sentiment of the reading we had read at our wedding:

' ...Those that truly love have roots that grow towards each other underground, and when all the pretty blossoms have fallen from their branches, they find that they are one tree and not two.'

For the first month, the tree struggled to survive. It needed gallons of water and shelter from the high winds. I watched it every day bending and twisting to stay up right, watching leaves curl and unfurl from dehydration to content. Such was my wish for its success I whispered to it "stay strong, little tree". And so it did - new growth appeared, like little spines, each one giving hope, marking the beginning of our married life, growing roots deep into the soil and providing shade for my ferns. We would watch this tree grow and mature and will provide us with happy memories when we became old and retired.

Two months later, as spring turned into a stifling hot summer, a bolt of unexpected news hit our world. My husband came home on a Tuesday afternoon. He sat me on the patio and cried, mumbled something about cancer, not curable, blood, bones....but I couldn't hear. I stared at the little tree and knew from that moment that our roots would be tested.