From the Man himself #2

Having had (almost) everything done for me during the last three months it only seems appropriate, given the content of this instalment, that I write it myself.  Here we go with my second blog...

Last week was always going to be busy but it turned out to very positive, too. In between 'Homes Under the Hammer', new favourites 'Get the Builders In' and 'A Place in the Sun' I had to fit in the usual on line meetings, emails and the odd phone call with three separate hospital appointments.

Tuesday morning was the first with Dr L.  Routine in nature, but with the usual banter, I learned that Dr L's husband is a ginger and carrying quite a lot of 'holiday weight'. Having previously learned that he had given Dr L a steam cleaner as an anniversary present I'm beginning to build quite a picture of him in my mind...

Thursday was always going to be more interesting.  Starting with a CT scan in the morning I was scheduled to see the jovial Irish Mr M in the afternoon for his verdict on pelvic improvement since our last get together three months earlier.  With almost three hours to kill between the two appointments I slumped on a sofa in my brace with crutches to one side and read about Brexit. Bang on time at 2pm (benefits of private cover!) my name was called and I struggled to my feet, grabbed my bag and crutches and swung off down the corridor in search of a pelvic update.

And what an update.  It turns out that the last three month's inactivity was not in vain.  Bone growth was described as very good and my brace, along with the crutches, could be consigned to history.  I enquired whether I could drive and return to work? Yes, came the answer, 'as long as I was sensible'.  And cycling?  The outcome of the ensuing negotiation was back on the turbo trainer in a month, riding proper in three.  Done!

Striding out of Mr M's consulting room and through the waiting area with my brace under one arm and crutches under the other I felt something of a fraud under the gaze of those who'd watched me hobble in the other direction half an hour earlier.

With an appointment the following day at UCLH in central London I'd arranged to doss down at my sister's cottage in Ewell.  As ever, it was a pleasure to see her and her man.  My sis is a committed vegan and, much like Harry Enfield's Smashie & Nicey who did a lot of good work for charity, she doesn't like to talk about it.  Still, dinner was excellent and very tasty. 

UCLH, in the heart of the congestion zone, is a sod to get to and even worse to park at. Being ahead of time is usually advantageous but when parking is limited to two hours arriving an hour early for an appointment of unknown duration is problematic.  Driving round in circles for thirty minutes before parking and heading in was the answer and, as the day before, the private patient is seen on time.  This time there wasn't really news, more an explanation of the treatment plan. A single dose of chemo followed by eight days of injections before a stem cell harvest,  Then either two or four weeks of daily radiotherapy.  All no doubt necessary but not quite as appealing sounding as the previous day's progress report.

So with a hair cut, a beard trim and 'Homes Under the Hammer' set to record it's back to work and three days in Coventry this week.  Be careful what you wish for, eh?

Merry Christmas you lovely people!

So I finished work on Wednesday - I was invited to the pub for nibbles and carols but I'm afraid I took myself off for last minute Christmas shopping (turns out it wasn't last minute and there were many more subsequent trips to the shop for 'bits').

Man has had pains in his legs and feet. His prescription for Gabapentin has tripled and we're hoping that will help take the pain away.  Man has also tried - fruitlessly - to get an appointment at UCL, Cancer dept, to find out what the next treatment will be. Turns out that UCL are too busy to answer the phone/return calls and so we are none the wiser.

But, on Wednesday, Chaucer made contact and said that if we'd like a scan this side of Christmas then we'd better get in the car and make it within the hour. Which is what we did. And after an hour of droning and whirring an MRI scan was in the bag.

24 hours later, Man spoke with one of his wonderful Beckett nurses - they saw the scan report and said that there's nothing 'that needs reporting'. But I guess we still don't know if the tumour has grown or shrunk from that. A did tell us that his last blood test reported that PP levels are a 4. Still. Quietly disappointed that PP is not nearly a zero - reminder that PP levels indicate cancer. Ideally we'd like the score to be 0. I'm hoping it will be soon.

So - we still live and continue on as normal because we can.  My best friend took me to Brugge for the day which was lovely, a day off, a magical visit, light relief - She knows what floats my boat and what I need 🙋

A couple of shout outs - my sister and her husband for the laughs, my friend for delivering homemade egg-nog and a thoughtful Christmas wish with words, biking buddies for thinking of my husband who can't get out so came to him - K, K and J. Thank you for warming our Christmas Eve and for putting a smile on hubby's face.

And so, we wait with anticipation for the MRI results, for the New Year's cancer-fighting plans but most of all we welcome the season with lots of roasted meat, sweet treats, thoughtful pressies and family around us.

Merriest Christmas to all of you xx🎄🎅🤶

Oh Hark all thee NHS

Hello supporters,

In the week I took hubby to our school's carol service. Selfishly I wanted to go to see our girls, to have a sing song but most of all I wanted to get Man out.  And we had a lovely evening - carols, mince pies and intros to some of my work colleagues. 

I haven't been inside a church for a couple of years but - a carol service takes me back to being in the choir and a chill in the air, a serene reminder of the reason of why we celebrate Christmas.

The chamber choir, the orchestra, the arrangement was wonderful. I struggled to hit the top As but the descants still came naturally to me. I thank my mum for choosing a church school - whether or not I appreciated it at the time, my sister and a I had a well rounded education and an appreciation of music. Christmas brings music alive.

I was proud to introduce my husband to my work colleagues. He met influential people and made them laugh (to my expense). He wore his body armour which was conspicuous and hence a talking point about his 'injury', as to why he couldn't sit at the front, and why we needed to be near a column  (to lean on).   And so we sang, sort of, we listened in awe of the soloists and the orchestra. I have huge respect for the students who dedicate time to rehearsals; it was a pleasure to sign them out of of school and see them pop off to the church to rehearse. Again, a throw back to my childhood, waiting in the wings whilst listening to dad tuning up and relishing the band warming up.

And so, an introduction whilst wearing a body armour is a talking point. I've got the patter down and say that 'hubby has a blood cancer which has eaten his pelvis'. And everyone we've said that to has been kind and thoughtful and sympathetic. And a wonderful friend, JC (not THE JC but near as damn it) has given us practical advice and a promise to pray for us. We'll take that.

Hubby has decided that his response to those awkward questions will be ' I'm recovering from cancer'. Wow, what a hero - he doesn't want to upset strangers or make friends feel awkward. And yet, the celebration that he's recovering is so positive - again, myeloma can do one and I'll take the recovering story.

This weekend my amazing dad has visited - he joined me at work on Saturday and celebrated Christmas with some wonderful, talented children. It was an honour to introduce my dad to friends. The fact that he took his recently restrung guitar in and them promptly forgot it was not a bother - my friends and some students will remember Mr Butterfly for being part of the Shiney Christmas celebrations).

I digress - yesterday, a lovely man from the NHS came to deliver and install some OH aids - two leaning stools and an aid to assist man getting out of bed. The OH therapist also prescribed a lift to help  raise the bed to assist Man getting out but that's yet to arrive.

We have an appointment to go to UCH on Friday - but we don't think it will be beneficial as they don't have Man's records. There's lucid talk about stem cell harvest but we'll know more in the next few weeks - bear with us.

In the meantime, hubby will attend the funeral of a very gorgeous man - a man whose wedding we attended only 3 three years ago.  Our thoughts and love are with his wife.

Time is precious - I hope we spend it wisely xx

Gracious Pt2

So my last entry said that Man had ups and downs. I didn't specify the downs. I was high on the ups. Here are the downs:

His leg hurts. He has ankle pain. His cast makes life very uncomfortable. He can't leave the house, he can't walk the dog, he can't cook a meal, he can't sit at the cinema, he can't drive his car, he struggles to eat dinner at an angle. He has to suffer my wayward ways of coping, he struggles to engage with the boys, he is compliant with watching me taking the bins out, he grapples with Max walking the dog, he relents when his best friends go out on their bikes. My man relents when it comes to housework, laundry, cooking. Man is a hero.

Man has a Disability badge - so he can park near entrances. Man has a myeloma diagnosis so he can access cancer wards with the most joyful nurses. Man has 23 hours in bed to alleviate his pain and so he sucks up lonely times. My husband is resilient, hardy. My husband is gracious. My husband is grateful for every single day and for every single day ahead of him.

Life in our house is hard - our children push the buttons, hubby is unable to do physically anything - I am the cleaner, cook, carer, parent as well as working full time. Life is a dichotomy of caring and living.

My role is practical - it's all I can reliantly do. Whilst my husband heals, I wait. And I'm not good at that but I do my best. My best is not great, my best is a trial, but my best is all of me. I try. I wish and I hope and toil to make his life as easy as it can be.

Life is a challenge and provocation meets us daily.

Tomorrow Man will again visit Beckett Suite for his Zometa. I can't be with him, I wish I could be.

Heal with us, I'm trying to xx

Gracious

Hello supporters,

This is a long over-due catch up. I'll start at the beginning...

Man has had ups and downs. The ups are visits from friends, new and old. A cherished friend went on safari in Kenya and took my husband, albeit a laminated photo of him, with him. Each day we clocked in to sharing an experience, be it on safari, sharing the weather, sharing the good times and the more uncomfortable. RA, I - we - love you for thinking of our hero and for sharing your expedition with my hubby who can only imagine being there. (And the fact that you turned up with your amazing tan with the pretence to buy a car warmed our hearts evermore)

The chemo suite at Chaucer put Man in touch with a myeloma patient, J. J lives near to us, was diagnosed 8 years ago and has been through a hellish time of treatment. J also is upbeat, happy, gracious and has a wealth of knowledge. He's suffered tumours, chemo and stem cell transplant. On Tuesday the man himself visited us and breathed life into our hope. He's honest, funny, truthful and an ally. We've never met anyone with myeloma before. And so there he is, years later full of beans and loving life. Our first meeting was validated, cancer can do one!

Last week we received flowers - but more than that they were wishes and love. How grateful are we that people in another time zone are thinking of us?! N, we love you for bringing light into our life.

    

I now work full time and so hubby is home alone every day. But this week he's had his barber round to cut his hair, he's had a work mate visit to make him feel part of the whole structure. And today good friends have taken him out for 'a coffee'. I don't think it is for a coffee but I don't care. Hubby is in bed for 23 hours a day. I can't do more than make him meals but his friends make him memories. I shall overlook the fact that he will cheat the 'sitting position' and will chalk it up to living. Living is such a precious commodity. Living can be taken away so cruelly and quickly. Unfortunately we know such lovely people who have been taken: C, and so his little boy lives on without his dad. D, whose wedding we enjoyed, a generous and kind man who suffered needlessly. And their wives. Braving the last days, living each day as it should be lived.

I guess we never know when is our last.

I'm so grateful that I go to sleep with my gorgeous man. I'm so comforted when I wake up with him.
Waking up is a blessing. Waking up is what it's all about.

Thank you for following, I'd love to hear from you xx

Birds

Hello all,

Each week I'm informed about a person who reads my blog - I thought I knew all of you, but that's not true.  Man tells me about old muckers of his who subscribe to me, people who knew my hubby before I did. Those of you who knew him as BMX Boy, as Tin Man at uni, mates of his who knew him as a gangly U2 fan, probably tall for his years, a bit shy with the ladies. Am I right?!  So you're strangers to me, not to him but to me, and I'm weirded out with you all reading this. Maybe you can flesh out, ie, dish the dirt, on the man you knew before I did!

Friends, strangers and fellow Man-Associates, we're all here together because of him.

This weekend has been lovely - we had Man's mum, dad and sis visit. Mum and dad come from the Midlands, which, when one of the main motorways is closed, is no mean feat. Their journey down for the day was fraught but we appreciate their efforts and had a delightful day. We ate lunch, took pup to the windy beach, chatted, ate dinner and came together as a family. Mum, who is known to chit chat to all and sundry, strangers and anyone who'll listen, commented that Man wouldn't 'stop talking' 😅 Talking to him this morning, we conceded that hubby was showing his loving family that he's ok, that he's coping and that he wants to allay fears. His humour is as sarcastic as ever, his energy levels are high and his appetite is vivacious.

Yesterday, Man took a caring, loving moment to hug me in the kitchen - to thank me for hosting and feeding his family. He put his arms around me, held me close and - I thought - enjoyed a husband and wife moment. Until he said 'You know, you can hug me back.' To which I responded 'I am hugging you, you just can't feel it with your brace on!'

I go out in the garden in the mornings (don't ask why) but I always enjoy the air, the planes flying over and the birds waking up. This morning, I saw a magpie flying. Now, usually I see magpies sitting on roofs, minding their own business or waiting to zoom down on the fat balls that I've put out. But this morning, a magpie was flying, except it was soaring, floating on a thermal and hugging its wings in close. I'd never seen that before. Magpies are usually my chatty, cheeky neighbour who potters along the fence. But seeing one in flight today made me take notice. Its body was the shape of a bullet, streamlined and stealth-like. And it looked weird, unusual.  And then I remembered - it's a frigging bird, of course it flies! That's its purpose, that's the most natural thing in the world, doh!

I enjoy watching wildlife, seeing how Mother Nature gives each species its skills, its motivation and impetus. Slotting in together, not just as a food chain but as a study and understanding of our incentive and inspiration.   Each and every collection has meaning.  Birds may be feared by slugs but their flight and collectives inspire me  - how I wish I could see the world through their eyes.  A birds eye view is both a basic survival mechanism but also a fundamental perspective on the wider world. I'm learning to see the world, its struggles, its challenges and its instruction through a birds eye.

Faith is the bird that feels the light when the dawn is still dark 

Remembrance

Whoa! Supporters, you are awesome. Man and I are blown away with how kindly you have responded to our blog, in particular the last two posts.

We've had a veritable, extraordinary and generous response. Firstly, I apologise if I frightened anyone; I know that some family members were upset with my foul mood - I didn't mean to upset. Secondly, we thank you with our whole being for your well wishes. In addition, we've received:

Home-cooked meals, goodie boxes, including generous pressies, cards, visits (from five friends in five days), homemade chutney and jam, free dog walks, 'Special' ie ridiculously strong, beer from the US and yet more ale and chocolate.

It might appear crass to list Man's bounty but behind all of them are wonderful, kind, loving, thoughtful people. And I document it here because I want to remember.

One might ask 'what is the meaning of life?' One also might ask 'Why has cancer affected us?' And a cynic (myself included in darker times) might ask 'what's the point?' All opinions on here are my own but here's what I think. The meaning of life is growth, cancer is sent to us so that we can appreciate the meaning and the point is that people are awesome.

With so much pollution, corruption, greed and other human indulgence affecting our planet, it's sometimes hard to connect with sincerity and humanity.  I know that's true for me, it might come easy to you. With each day that passes, I am grateful for cancer. Grateful that the little bitch has opened my eyes, let me and my husband feel the warmth, the love and compassion.  Each battle is only ever won with a human element of support, wisdom and passion.

Which neatly brings me on to....

Today is Remembrance Sunday and I've been humbled by the many observations I've witnessed in and around where I live and at the school I work in. A few years ago I bought three poppies from the Tower of London. I did so out of remembrance for three young men who went to France during WW1 and never returned. They were born and bred on a farm about 2 miles from our current home and the fields, lanes and great oak trees where I've walked my dog would have been familiar to each of them. I have three sons of similar ages and I cannot begin to imagine how their parents coped, watching each of their boys go off to war and even less can imagine the devastation in their family when all three didn't come back.

Thank you Rowland (24), Cyril (22) and Percy (19) Bailey, rest in peace.


Poppies

And here's an interactive map of lost men who lived near you A street near you

From the Man himself...

Feeling the love and positive vibes

Some time ago Wife suggested I take a turn at writing a contribution to her blog. She’ll probably say it’s ‘our’ blog, not ‘hers’, but on the basis that it was her idea and she’s written every instalment so far I’d argue that. I haven’t written anything up to now, in part, as she writes so well that my rambling is certain to look amateurish by comparison. Nevertheless, with Wife having posted nearly 20 entries I have to man up so here we go...

It strikes me that this illness is almost certainly as hard, if not harder, on Wife than it is on me. Aside from doing all the household chores and working full time (and all whilst I lie down doing little more than browsing Netflix and MTB videos on YouTube) Wife has to watch her husband of just two years endure a bit of a crappy time. And whilst she’s barely uttered a word of complaint that’s not a recipe that sits well with the happy wife = easy life formula.

Wife’s last blog, posted on Sunday, generated quite a response. It was pretty hard hitting and, as I only get to read them with you after they’re uploaded, I didn’t have any input let alone editorial control! And neither should I. After all, the blog has been not only Wife’s way of keeping friends and family updated but also her release, her vent. On the plus side it did generate a few extra visits and even presents so maybe it could be worth repeating the more brutally honest style purely for the material gain. Thanks to friends this week, Macy has been walked, delicious homemade jam and chutney delivered, a fabulous evening meal with accompanying real ale shared and a box of goodies, card and beautiful letter from work colleagues received in the post. It’s all conspired to make me feel very privileged and, despite my mediocre attempts at insults, banter and sarcasm, perhaps even appreciated by some of those around me. I have to say I’m genuinely touched and never expected this kind of reaction, particularly from - in some cases - people I didn’t know really had any particular affection for me. It would be easy to think ‘they’re just glad it isn’t them’ but I don’t think that’s the case. I think this kind of crappy illness just brings out the very best in people. Whatever, the net effect is that I’ve never felt so appreciative of my friends and am genuinely feeling the love. Which, as they used to say on The Fast Show, is nice.

It seems that even Kent County Council cares. Today it was confirmed that I will shortly be the recipient of a Blue Badge which will undoubtedly make life easier, especially when visiting UCH in London that only have disabled parking bays.

The medical update was good this week too with my paraprotein measurement dropping to 5. The falls have slowed of late but Dr L remains very upbeat about the progress and I take heart from her positive assessment.

So all in all it’s been a really good week, helped not just by the kind words and deeds mentioned above but also, let’s be honest, by the installation of Sky Q in our bedroom and purchase of a shiny new iPad on which this blog was written. I somehow doubt that the anticipated delivery of a new tumble drier and dishwasher on Monday will elicit quite the same excitement in my next entry but they might make Wife’s life easier whilst I’m leaving her all the chores. And as we know happy wife = easy life.


Martin

A man in armour is always a hero

Hello supporters,

So - again - I haven't blogged for a while and that's because the seam that runs through our journey has not been without bumps. I guess I could write warts and all but that's not my style; once crappy stuff gets out there, there's no turning back so I tend not to go there. Those closest to us know how bad things get, how frustrating immobility is, how demoralising being a carer is, how badly cancer sucks.

Man now wears his armour for most of the day, every day. He is lucky - not many doctors prescribe the cast that he wears. Should anyone else with his, shall we say 'injury', they would be in a plaster cast which means total sweating, constant pain and probably a catheter. And yet Man's cast comes off so that he can actually take it off to go to the loo. Result.

But the bloody thing is cumbersome, unforgiving, uncomfortable and just adds to his pain. The reason he has to wear it is to keep his body still whilst his pelvic bones regrow. In itself, having no pelvis is painful and Man suffers extreme discomfort every minute of every hour. He struggles to get comfortable, despite having bought a new mattress. He struggles with doing every day routines such as showering and eating. Mentally, he struggles with much more. Here is a man who was, until 3 months ago, hands on - walked the dog, cycled miles every week, did the blue jobs and cared for his wife and family. All that has stopped and with the cease-fire so comes despondency and boredom. This blog is about his journey - our journey together - but until I can persuade him to write an entry himself then this is my outlet. And let me tell you, it's shit. Seeing your young, fit, healthy loved one become a disabled body overnight knocks the hell out of life. I won't lie - I've struggled with the adjustment. Someone recently described me as his 'carer' - that was harsh. I don't want to be his carer, he doesn't want me to be his carer and yet here we are. So yes, I 'care' for him and have taken over the household chores and responsibilities but really that's not helping anyone. It undermines his independence, my autonomy and our marriage. Again, cancer sucks and affects every aspect of our life. 

We met with a professor specialist in myeloma this week. The drive in was ridiculous - motorway traffic was tragic, inner city London was testing and there was no parking at UCL. However, the Proff was kindly and pro-active. So much so that her default suggestion to ongoing treatment was stem cell transplant. SCT is a bitch and, as far as we're concerned, a last resort. Man has a solitary plasmacytoma diagnosis and we're hoping that he'll beat that battle without having to face the war that is full blown myeloma. Hence, we don't want to suffer SCT until we really have to. And we both know that will mean cancer that is here to stay and we're running out of options. But we are - hopefully - not there yet. So we've compromised. In the new year, Man will [probably] have a stem cell harvest with a view to transplanting clean cells later in the journey. Click here for the ins and out of SCT: here  Oh, and did I say, cancer sucks. Man is filled with chemo as well as 7 other tablets every day, and weekly injections still - we're currently on cycle 5. To say that people battle cancer undermines the daily struggle. Many of the drugs affect Man's senses, mood, bodily functions and yet he is a warrior and soldiers on. He's my hero. 

And so we go to comedy nights, albeit, Man has to stand in pain, cannot travel comfortably and is all to aware that he looks like a storm trooper/gladiator with everybody staring. He bravely succumbs to his disability, he valiantly faces the pain, he mentally adjusts to his new position, he emotionally faces the shite journey that cancer offers.

This is a long one, no apologies. It actually doesn't touch on how bloody hard I'm finding things, on how much pain my husband feels on a daily basis and just how much cancer is a disgusting fiend with absolutely no rhyme or reason to human existence. Having said that #we'vegotthis  #teambradly #fighting

Acceptance

Hello supporters,

I haven't blogged in a while, the reason being there was nothing I wanted to publish. Not only was I avoiding depressing you guys, but I guess I didn't want to admit a few things. It's sometimes easier to bury your head in the sand and let the sun kiss your ass.

Scroll forward and yesterday was our visit to the bone guy in London. I was nervous as could be, Man wasn't. My anxiety was brought on knowing that we were not going to be given good news. I know my husband and I can see the pain he's in - and hear the clicks from his body when he moves - so I braced myself.  Sure enough, the affable and chirpy Mr M was not quite so chirpy. He got straight to business and showed us the CT scan of Man's pelvis. Or rather, pelvis area as there really isn't much left of his actual pelvis.  Even though there are signs of rebuild of bone, it was quite shocking. Inside of a minute of sitting down, Mr M suggested a body cast to be worn. Man immediately rejected that idea. It honestly went in one ear and out of the other. I sat silently, frustrated and holding back tears.

So basically the myeloma tumour has nestled into the pelvis and has eaten most of it - to the extent that Man's top half of his body is no longer connected with bone to his bottom half. He is literally being held together with muscle and ligaments. Mr M said it was a 'miracle' he was still able to walk. He could sense Man's resistance to what was being explained and so ramped up the diagnosis outcomes. 

"On a scale of one to ten, one being not bad, you're at a ten"

"You need to stop work immediately for three months"

(Still shakes of head from Man)

"A body cast is your only option. You must think of your family because if you don't heal you will be in a wheelchair for the rest of your life"

(Signs of shock from Man)

"This is serious. I could admit you to hospital for three months"

(Acceptance starting to register in Man's face. To lighten the mood he tried to crack a joke about thrusting to which Mr M responded with a stony face...)

After more persuading, Man relented and realised his fate. We walked out of the hospital sombre and downcast. Within a few hours an appointment had been made for a measuring and fitting for a body cast. It will be fitted on 24th October.  He will be able to take it off at night but it will limit his movement during the day and I already envisage Man will be like a bear with a sore head between now and Christmas....But needs must and we will pull together to make life bearable for everyone! Boys, you'll be taking the bins out and if anyone sees Man moving any further than to the bathroom and back, please rugby tackle him and get him to DO NOTHING!

Thanks for your support, it's been heartfelt (and delicious Mrs P), much love xx

This is a healthy pelvis ↑ 

And this is my husband's ↓

Movement

Hello, so here's an update:

I'll start with the weekend; it was not great. Man's movement was slow and painful. As a result, his mood was low having felt restricted for so long now. It's all very well sitting around and watching telly if that's your choice but now he's had that choice taken from him, it's very boring. And depressing. And of course there's no biking to watch anymore.  He said many times over the weekend that he'd like to just be able to take the dog for a walk. And there were many times when he didn't say a word (which is not like him) but suffered in silence.

Pain is a constant reminder of the infestation within his body and therefore it's easy to let it take over his mind. I made the misjudgement of asking our lovely friends to borrow a walking aid to help Man get about the house. He politely declined it - it didn't get further than the front door - and they kindly took it back to their house.  I felt awful, I felt I'd pushed something on him that he clearly wasn't ready for.  Most of all, I didn't want to put the idea into his head that I viewed him as disabled. I mean he clearly is (!) but obviously his pride and will is nowhere near ready and that's fine. And so, pathetic fallacy style-y, we sat indoors on Sunday, hardly moved and watched the rain relentlessly fall outside.

BUT, by yesterday the mood - his and mine - had lifted. The sun was shining and it was our final trip to Chaucer for Round 3. Man made no bones (pun intended) about the pain he'd been in and the nurses listened warmly and prescribed Gabapentin for his nerve pain.  The usual bloods were taken,  Velcade injected into his belly and Dex was administered.  Whilst waiting to see oncologist Dr L, we were told that his paraprotein levels have gone down yet again! In 3 months they've gone from 58 to just 8 so these chemicals are indeed working, hurrah! But of course, Man's primary concern now is the damage in his pelvis and we were assured that an appointment will be made sooner rather than later to see the bone guy, Mr M, in London.  Hopefully a scan date will be offered very soon.

In the meantime, full of dex (steroid) and the new and wonderful Gabapentin physical improvement was visual to me and felt keenly by Man. In fact, the bloke literally sprung out of bed this morning and did a little naked dance for me, a la Strictly Come Dancing style 😄  Believe it or not, it was the most welcome sight seeing my hubster prance off to get the morning coffee...

Movement breeds freedom and freedom soothes the mind. After a pretty shitty week, all is much better in the world and we're back to flying the #teambradley flag. We've got a nice weekend to look forward to, we've got sun on our faces and meds doing their job.

Oh and the other big news is that Man is currently writing a blog entry - watch this space!

Big love xx

PS - Bone scan appointment just in - 11th October :-)

Round 3 - half way!

Hi Supporters, here's the update of today's hospital appointment...

So we were in early morning for bloods, weighing and caring nursing. Man knew it but it was confirmed that he's put weight on. No surprise really as he's been inactive for 7 weeks. In fact, when our lovely oncologist, Dr L, came in, her very first words were "Oh, you've filled out!" (sic). She is charming and pretty so man took her remarks on the chin :-) She explained that, as a cancer doctor, she was used to her patients losing weight so it was a disguised compliment really. 

The Beckett suite is where the cancer patients receive their chemo. Very often, Man is the only patient in there with 2 amazing nurses to attend to his treatment. But today it was busy, in that Man had lots to take in, needles to be stuck in and long hours reading the paper and drinking the posh coffee (biscuits might or might not have also featured...) In the suite there are 5 'pods' where patients sit in an electric reclining chair with air con, telly and total privacy. God bless the NHS but we're so grateful that we endure the arduous, and sometimes scary, treatment in comfort. Of the other four patients on the ward today there was an alarming common denominator - that was age. We don't tend to speak with other patients, it's kind of like an unspoken law that each respects the privacy of each other. None of us know where the other is in his/her 'journey' so we don't pry and we're never asked. There is often a cursory glance from carer to carer but the unspoken is usually left lingering in passing. 

In terms of today's outcomes, Man had Zometa, a flush, Velcade, dexamethasone, 2 coffees and a consultation with the lovely Dr L. Round 3 has definitely started. Man's limited mobility and increased pain appeared to worry Dr L enough to suggest a more urgent appointment back to Mr M, the bone guy. Apparently the compromised integrity of his pelvis might be more urgent than the planned wait until to November to find out. Also, the Velcade appears to be causing neuropathy (click here for more info) and so the dose has been halved to just once a week - yeah, only one hospital trip per week. Thank you MP for giving us the inside info and making the connection.

Back to the age thing - there was one man who appeared to be about 60, which I consider young as it was the age my own mum bowed out.  And the other three were most certainly between the ages of 40 - 55. Now, I don't know if they were there out of their own pocket or through insurance but what I do take away is that cancer gets everyone. Athletes, mothers, builders, sons, nurses, teachers, actors, shop assistants, train drivers and musicians. My Man is fit and healthy, had a resting heart-rate that a competitive sportsman would be proud of. He ate well, didn't smoke, drink much or has ever come in contact with asbestos - so why him?

We'll probably never know. And we don't need to. We cling to the next appointment, as always, as is going to be our life routine for a while yet.

Big love and thanks for continued support xx

Staying strong

Ok, so little tree has visibly become weather-beaten. I noticed today when I was cutting the grass that leaves were curling and the top ones had become wind-singed. It alarmed me, I won't lie.

But as I stared at it, I noticed also that the wooden steak was steadfast, holding our little tree firmly in its growing position. Moreover, I noticed what the jasmine behind it was doing. And that was clinging on, firmly tight, to the trunk - reaching, clinging, holding up our tree up. Supporting. Cuddling. Backing it battle against the elements.

And this is what our family and friends do, daily. I've written about how much love and support we've had but here's a graphic representation of how we're coping through cancer:

Thank you for holding us up, for supporting, for feeding, for believing. We're thankful for life and growth and for our tomorrows. 

Man creaks when he stands up, we're not sure why. All meds from Round 2 are now finished and we're eagerly awaiting Tuesday's oncology appointment for answers. Perhaps all we'll get from it is posh coffee and steroids but we wait anxiously for reasons why Man's mobility is getting worse. 

Hang tight, cos we are! 

Mardy bum

So back in 2005 when Man and I first got together, the Arctic Monkeys released their [sublime] debut album. Part of our early relationship was getting to know new music together and we both fell in love with Turner's lyrical perceptions and narratives of young people's experiences living in northern England. One of Man's favouite tracks is 'Mardy bum', about a bloke who is fed up with his girlfriends moods 😏

Now then Mardy Bum

I see your frown 

And it's like looking down the barrel of a gun 

And it goes off...on a day like today when you're all argumentative

And you've got the face on'.

He said that the track reminded him of me....which I struggle to recognise as me, naturally. I was, in fact, a very insecure single mum embarking on a serious relationship and did spend some time quite anxious at the thought of bringing a man into our family dynamic. Well that's my excuse, Man still holds a different opinion to this day and enjoys teasing me nearly 13 years later! 

Anyhow, a few months ago I finally secured Arctic Monkeconcert tickets which I gave to my hubby for our 2nd wedding anniversary in July and last night was our big date night. 

It wasn't until we were driving up to the O2 that it occurred to me I should have secured disabled parking and access. I did worry that Man might struggle, which he did a bit but he stopped and clicked his hip back into place sporadically and then we could continue our wander around the food court. We had some delicious food in Byron Burgers and a drink watching the hundreds and hundreds of Arctic Monkey fans passing us by. 

The concert itself was amazing - high energy, lively, pitch perfect and visually amazing. Man couldn't stand for about half of it so he perched on the back of his chair and each time he did, I joined him. But an amazing show and a wonderful anniversary celebration nevertheless.  

No Mardy Bum here, just lots of smiles 😃😃😃😃 Good times!

Plaster

I undertook some First Aid training yesterday – it's certainly beneficial for working in a school but I've dodged the training bullet for years. However, I am now a fully fledged First Aider. It doesn't mean I'm qualified to make any diagnosis on a sick or injured person; it merely means I have some knowledge to know how to respond to an incident in the first instance whilst waiting for the professionals to arrive.

And [predictably tenuously] that's how cancer is. I can cook for the patient, I can manage the medication and can offer interim suggestions and support in-between visits to the pros. In all honesty, it doesn't feel enough. There are days when I can't take Man's pain away, there are times when I can only watch the frustration and listen to his exasperation. It's maddening that, despite our well-intentioned positive outlook, the beast still takes over.

Unfortunately not only Man suffers but so do people around us. My son, Man's stepson, flunked his second year at uni. He's either got to do the whole thing again or try to wing it on his own. A third option is to appeal against the single mark that kept him from progressing onto Yr 3. But what would the mitigating circumstances be? What extreme circumstances might have affected our bright, intelligent son to have scored so disappointingly? And you know what, with Man's permission, we played the C-card. There wasn't much soul searching about it, indeed, it's got us thinking about how a cancer diagnosis impacts on everyone around us. One of Man's best friends makes no secret about how much he misses riding with him (Courgette King!), my oldest, best mucker chokes up when she reads the blog, his parents send food and probably feel helpless that they can't do more, as do his own children. But in this house the affects are keenly felt and my children are the ones who hear the pain and frustration, see me upset and feel how life is not always fair or on course as we had originally navigated.

And so, Man wrote a statement in support of the exam result appeal, citing 'concern that the emotional effect of my illness on the family, together with the demands of additional physical chores, has had a detrimental effect on E's ability to perform at the level we would have all hoped...'

It's not lost on us that many people are unable to continue with life as they'd wished. We constantly stick plasters over the cuts and try and stem the bleeding but, ultimately, it's the professionals who will make the life-changing decisions. Hang in there please folks, life as we know it WILL resume as soon as is humanely possible.

Growing pains

Firstly, thank you so much for your warm wishes, kind messages, visits and phone calls since my last post. They mean the world to us to know that you're all behind us. Again, it highlights all that is great about human nature; your sincerity and positive attidudes makes Man smile daily.

After not being at work for two months - shamelessly sunning myself and eating myself stupid - I returned today. It's a different role but as I walked through the school's doors I was greeted with such friendliness from my old muckers, asking how Man was doing. I'm proud to tell them that "he's well" which of course makes people feel better and knowing that the meds are working avoids the awkward 'C' conversation. And it's true, the meds are working.

But, as is usually the case with the internet world, life isn't always as rosy. I have so far written about the good but there is, of course, the bad (the ugly is a long way off!) Those of you who have had experience of cancer know that it's all consuming, both the treatment and the disease.  As much as Man's blood results are fantastic, ie he's kicking butt, the side effects are paradoxically debilitating. Loss of taste, whilst not lethal in itself has certainly worn down Man's enthusiasm for eating. That in turn takes some of life's pleasures as well as making eating nutritious food strenuous. On top of that and some other effects, lessened mobility increases apathy. He is stoically working from home but cabin fever has definitely set in. The rule of no walking or riding have become barriers to some of life's enjoyment and there's an ever searching to keep the balance of enjoying life and not letting myeloma take over. In our minds, chemo will be over by November, in time to enjoy Christmas and winter tyres.

A precious friend of mine listened to my worries today and she expressed what my husband is experiencing as 'growing pains'. It hurts to grow a new pelvis but my goodness, he's doing it 👍

Fortitude

A quick update - Man had chemo yesterday so we're well into Round 2. He does tolerate the injections well and, as usual, takes his laptop with him to hospital so that he can continue to work. What a man!

So results of last week's blood tests are back and hallelujah, his paraproteins are now down to 12! At diagnosis they were 58, normal is 0, so he's going in the right direction. Suck that myeloma!

Celebrations included redesigning our bedroom to accommodate the cancer chair so we now have a fully functioning man cave with said chair, music, books and a telly set up. This morning, the sun shone directly onto the chair so I took that as a good sign of the stars' motivation. They'll always shine, even if we can't see them.

And the sun continues to shine on us. Man stoically watched his friends cycle off for the Saturday Morning Rampage, smiling with them but wishing he was going. To compensate, he's taken Whyte T-130  out in the garden for a  'Clean and a fettle.'

My Man:

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 😉