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