(follow up to July post). ........ ....and so the children wanting to be adults wanting to be children talked to me the other night….their faces full of concern…..wanting to ‘do’ something . Looking back I guess I have been sensing that this was coming again…..that time when it all gets too much for them…..and the mantra of ‘you need to see a counsellor Mum’….we are not your counsellors …’ echoes from the chasms of their love for me…and the uncertainty of having deep conversations and seeing their mother as a fragile human being……. (mothers don’t get sick!...mothers just keep going ..a rock that stands as a buttress to their waves of deep insecurity and pain.…) I look at them and see them as they once were…. children, so small yet resilient, excited with life and cautious as well……trusting…dependent……and the children are now adults …they haven’t really changed……just got bigger! Yet again the child within each of them cries out that ‘this is too scary mum….please don’t talk to us about it………’ and then this will swing again to ‘why didn’t you tell us …?” a timeless pendulum…of filtered conversations thoughts and feelings that somehow makes for fragile progress…… in an enclosed world… I hold their words close to my heart. Hubby's journey is a challenge …a journey for each of us…and also a shared journey…finding out who we are …in ourselves and to each other…….how much to share …when to retreat and when to challenge….when to simply ‘hold’……. Parenting doesn’t stop when the children become adults …with the fresh eyes of young adult human beings believing they have the answers that older adults still look for. Their conversation out of concern for me and safety for them…….has helped me realise that cancer now defines my life …my conversations …my thoughts....what I do each day…even my sense of self……and this is limiting and dangerous. It has been quietly growing like the cancer itself I realise that taking back control of who I am has a sense of urgency….. A brave soul said ‘each day is a new beginning’ …….I hope so……. I want to work out my own ‘treatment protocol’ to claim back what I have given away as I have tried to understand what is happening and tried to balance the needs of others…with my own……There is no understanding….there just is. Each day the new question: what can I do today to heal myself? What choice will I make as to how I am each day? And then ………waiting/seeking…listening/doing…holding/letting go…. ..... ... View more

I hold the gift in my hand…it is warm to the touch…..it is beautiful in its simplicity……he helps me tie it around my neck….he is nervous with all that he wants to say………but he is silent...the words kept within                                the gift is enough…. Pounamu…… ……the jade can only be given as a gift …he has chosen the design….”it seemed to be the right time…the right design…” my son-in-law said. My fingers trace the shape …a spiral…..life endings and life beginnings …the gentle unfurling of the fern frond……continuous ….unbroken…..I can trace the journey into the centre as I hold it between my fingers …and outwards again…..my own personal labyrinth…my own personal journey to find  God within……and strength to walk in the world. My hands seem constantly drawn towards it …to hold and trace a journey…….I didn’t think my life would come to this……but it has…and I find my myself holding my husband with nervous hands ……..full of things I want to say …but somehow the words get stuck …and I am silent                                                 and I trace the journey. I wear the spiral always ...... holding the spiral  when I walk….as I sleep and when I wake up, my fingers are curled around it….it has a strength of its own…that I draw from……. I am reminded of the other gifts that have been given freely ….coffee…..a shoulder…..a hug and kind word……time ……connections …….laughter I am being held in a gentle way ……the spirit manifests in unusual yet ordinary ways……..for we are ordinary people. We start the clinical trials soon….another level of treatment……more complex….time away…disruptions; holidays and plans are phantoms in the fog that seems to descend……. And I hold the precious Pounamu spiral from my son in law in one hand and I hold my husband in the other…..and I am grateful for those who bring gifts of light and warmth.   ... View more

and so the children wanting to be adults wanting to be children  talked to me the other night….their faces full of concern…..wanting to ‘do’ something .   Looking back I guess I have been sensing that this was coming again…..that time when it all gets too much for them…..and the mantra of ‘you need to see a counsellor Mum’….we are not your counsellors …’ echoes from the chasms of their love for me…and the uncertainty of having deep conversations and seeing their mother as a fragile human being……. (mothers don’t get sick!...mothers just keep going …) I look at them and see them as they once were….  children, so small yet resilient, excited with life and cautious as well……trusting…dependent……and the children are now adults …they haven’t really changed……just got bigger!     Yet again the child within each of them cries out that ‘this is too scary mum….please don’t talk to us about it………’ and then this will swing again to ‘why didn’t you tell us …?” a timeless pendulum…of filtered conversations thoughts and feelings that somehow makes for fragile progress…… in an enclosed world… I hold their words close to my heart. Hubby's journey is a challenge …a journey for each of us…and also a shared journey…finding out who we are …in ourselves and to each other…….how much to share …when to retreat and when to challenge….when to simply ‘hold’……. Parenting doesn’t stop when the children become adults …when with the fresh eyes of young adult human beings  they  believe  they have the answers that older adults still look for. Their conversation  out of concern for me and safety for them…….has helped me realise that cancer now defines my life …my conversations …my thoughts....what I do each day…even my sense of self……and this is limiting and dangerous. It has been quietly growing like the cancer itself I realise that taking back control of who I am has a sense of urgency….. A brave soul said ‘each day is a new beginning’   …….I hope so……. I want to work out my own ‘treatment protocol’ to claim back what I have given away as I have tried to understand what is happening and tried to balance the needs of others…with my own……There is no understanding….there just is.  Each day the new question:   what can I do today to heal myself?   And then …listening for that still small voice……waiting/seeking…listening/doing…holding/letting go…. ... View more

in the beginning  In the beginning my husband was diagnosed with Mulitple Myeloma in 2012.   I was stunned….shocked…my world crumbled .....he had always been healthy and active and into exercise …in our long marriage I can’t remember him ever taking a Panadol!    After a year of increasing pain and  many, many, blood tests and scans they finally came up with a diagnosis….and with a tumour on his spine…rushed into surgery. ….so  they gave a diagnosis …and described  treatment protocols and there are some things they didn’t tell me ….. ….and  time goes on…there are more more treatment protocols.  I know that this type of cancer is not curable because they have told me that…….it’s just about treatment options to keep it under control. …and there is a dulled sense of security So I wear a brave face ....and smile…nod….. Without understanding   They don’t say that time speeds up ….protocols change dynamically ...weekly/daily…diagnosis become  more complex….more confronting…….they say “you will have years” …..and then it's 'urgent' again there is a timetable of appointments in no time…….   Blood tests, scans …stays in hospital………suddenly in no time it seems to take over my life…again.....it is what we talk about as a couple….it has a firm place in my day ….and thoughts……. Occasionally I break free…and dream of holidays and bucket lists …..of  things to do and places to go…I socialise…meet with friends….. But then as insidious as the cancer, the timetables/appointments creep in again…clamouring for attention and …….usurping the right to dream and plan……… the wheel spins faster…….and we run faster to keep up They tell me…that as the partner I need to have a support system……HA! Adult children want to be supportive, helpful…..supporting Mum……..but…understandably…it becomes too confronting for them as well……its Ok when it was just cancer…something vague… .out there ,“but dad looks ok?”    ..but then it becomes the impact on daily life….possible loss of mobility……possible loss of hearing as it creeps into his jaw ….what ifs….what ifs…..  who can blame them for being as scared as me…….and yet they have the luxury to withdraw …to become children again……insecure…afraid…..overwhelmed…. and I have to be the adult……..but I am also a child……..I too want to withdraw into another world ….. So….talk to friends…….who want to be supportive/helpful….but it’s just too hard for most to comprehend ….or just to listen… for some who have been through the journey…too raw…..…… so again the vacuum creeps in and again it’s just me and hubby and the cancer…the deadly trio. So…talk to a counsellor…..um about what???    Well-meant advice …...focus on the positive……take each day as it comes…relax…keep your normal routine as much as possible….look after ‘you’ …. It’s tiring …and sometimes it’s just too much and I wonder if I have gone into denial….has the pendulum swung too far in the other direction?   And of course…Talk to God……he understands………. yeah…but it’s a bit of a one way conversation…..a bit like the scene from Ghost …as his ghost sits behind her as she creates pottery ….holding her …guiding her hands…and romantic music and words play in the background ……but she cannot feel…..see or hear him……when all she wants is to be held in a way that is real…..the movie version of love is as thin as the celluloid it is recorded on….. Being the partner of someone who has cancer…is lonely, isolating, tiring…and full of misunderstanding ,unfiltered emotions and conversation…..potentially coming between those I love and me…as I try and reach out to them…… they in turn curl away protecting themselves from more pain…. reaching out to me with their faces turned away. It is painful watching your loved one change …not only physically….but emotionally…even smelling different because of the chemicals in his body………the person/dreams we had when we were married didn’t include this …even the phrase ’in sickness and in health’ has a hollow ring to it…we say yes …and nod with an innocent heart full of commitment and promise…..... ... View more

  in the beginning  In the beginning my husband was diagnosed with Mulitple Myeloma in 2012.   I was stunned….shocked…my world crumbled .....he had always been healthy and active and into exercise …in our long marriage I can’t remember him ever taking a Panadol!    After a year of increasing pain and  many, many, blood tests and scans they finally came up with a diagnosis….and with a tumour on his spine…rushed into surgery. ….so  they gave a diagnosis …and described  treatment protocols and there are some things they didn’t tell me ….. ….and  time goes on…there are more more treatment protocols.  I know that this type of cancer is not curable because they have told me that…….it’s just about treatment options to keep it under control. …and there is a dulled sense of security So I wear a brave face ....and smile…nod….. Without understanding   They don’t say that time speeds up ….protocols change dynamically ...weekly/daily…diagnosis become  more complex….more confronting…….they say “you will have years” …..and then it's 'urgent' again there is a timetable of appointments in no time…….   Blood tests, scans …stays in hospital………suddenly in no time it seems to take over my life…again.....it is what we talk about as a couple….it has a firm place in my day ….and thoughts……. Occasionally I break free…and dream of holidays and bucket lists …..of  things to do and places to go…I socialise…meet with friends….. But then as insidious as the cancer, the timetables/appointments creep in again…clamouring for attention and …….usurping the right to dream and plan……… the wheel spins faster…….and we run faster to keep up They tell me…that as the partner I need to have a support system……HA! Adult children want to be supportive, helpful…..supporting Mum……..but…understandably…it becomes too confronting for them as well……its Ok when it was just cancer…something vague… .out there ,“but dad looks ok?”    ..but then it becomes the impact on daily life….possible loss of mobility……possible loss of hearing as it creeps into his jaw ….what ifs….what ifs…..  who can blame them for being as scared as me…….and yet they have the luxury to withdraw …to become children again……insecure…afraid…..overwhelmed…. and I have to be the adult……..but I am also a child……..I too want to withdraw into another world ….. So….talk to friends…….who want to be supportive/helpful….but it’s just too hard for most to comprehend ….or just to listen… for some who have been through the journey…too raw…..…… so again the vacuum creeps in and again it’s just me and hubby and the cancer…the deadly trio. So…talk to a counsellor…..um about what???    Well-meant advice …...focus on the positive……take each day as it comes…relax…keep your normal routine as much as possible….look after ‘you’ …. It’s tiring …and sometimes it’s just too much and I wonder if I have gone into denial….has the pendulum swung too far in the other direction?   And of course…Talk to God……he understands………. yeah…but it’s a bit of a one way conversation…..a bit like the scene from Ghost …as his ghost sits behind her as she creates pottery ….holding her …guiding her hands…and romantic music and words play in the background ……but she cannot feel…..see or hear him……when all she wants is to be held in a way that is real…..the movie version of love is as thin as the celluloid it is recorded on….. Being the partner of someone who has cancer…is lonely, isolating, tiring…and full of misunderstanding ,unfiltered emotions and conversation…..potentially coming between those I love and me…as I try and reach out to them…… they in turn curl away protecting themselves from more pain…. reaching out to me with their faces turned away. It is painful watching your loved one change …not only physically….but emotionally…even smelling different because of the chemicals in his body………the person/dreams we had when we were married didn’t include this …even the phrase ’in sickness and in health’ has a hollow ring to it…we say yes …and nod with an innocent heart full of commitment and promise…..... ... View more