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
Monday, December 10, 2018
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
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.
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
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
Thursday, November 8, 2018
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
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
Sunday, November 4, 2018
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
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
Thursday, October 11, 2018
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 ↓
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 ↓
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