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🎄🎅🤶
Monday, December 24, 2018
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
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
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
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
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