Sunday, January 13, 2019

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?


Monday, December 24, 2018

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🎄🎅🤶

Sunday, December 16, 2018

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




Monday, December 10, 2018

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






Saturday, December 8, 2018

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






Sunday, November 18, 2018

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 





Saturday, November 10, 2018

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