Wednesday, 15 March 2017
Paint and cheese and more scarves and scary satnavs ((from 18/10/2011, an unpublished draft entry, probably due to me nodding off?))
But, not all at the same time :)
Well, trying to put a scarf round your head can get quite tricky when your arms are so much weaker and the scarf slips and by the time it's in the place you want it you can't tie it up straightaway because your hands and arms are aching... oh yes, mornings can be creaky anyway with the fibromyalgia, lol! So, I can't afford to press the snooze button on the alarm clock anymore as I really *need* those spare ten minutes!
Today my madly lovely mum and stepdad started painting the chimney breast in the smaller room downstairs which was a spare sitting room but is being transformed into my bedroom...my free range teenagers cannot share a room anymore!! And I am happy to create my own bed-sit downstairs with bed, sofa, music system, tv, and woodburner :) Anyway, it's a lovely deep red, get me with my feature wall lol!
I ordered my online shopping last night and salivated all day waiting for the cheeses and houmous and pate to arrive.....nom nom nom! Just stuffed our faces with nice bread and all those lovely things.... boursin, gouda,, vine tomatoes sliced up on top - *contented sigh*
Tomorrow I have to find my way to Caerphilly fire station to their meeting room for Freedom Programme training (and NOT at all thinking about any firemen I may see there - although there may be a theme emerging here this week...) so I have borrowed stepdad's satnav .... just programmed in the postcode etc and the 'man' told me to turn around as soon as possible...... whoa, I'm sat on my sofa, he's a bit keen!! Let's hope he's as eager first thing in the morning eh?
Tuesday, 14 March 2017
Cancer-versaries
Well, here I am again, after a long absence! That is something of an anniversary in itself ;)
I feel as though I am both talking to myself and to an audience when I write these entries - at first it was just me, then some friends were invited, and occasionally I have shared a particular post with my friends on Facebook etc. I do not know whether my writing style is just that way, or if knowing there are others looking over my shoulder has shaped my writing!
Five years ago I was sat in a room on a ward, waiting for the stem cell transplant to begin, and the room to be sealed, to be put into 'isolation' conditions, which meant no visits from my daughters as only adults could visit. I was scared (the 50/50 chances suddenly seemed very real), and pretending not to be scared so everyone else would hopefully feel a bit better, and very cross that cancer was stopping me from being with my children!
I am so glad I was writing this diary/blog/notes throughout my cancer and its treatments, even though there are gaps when I was too poorly to write, and even though I often made light of things too, because there are things I had forgotten about, sad, funny, wonderful and horrid, and to have this resource to look back on is very healing, even when it hard to read.
5 years! And we kicked 'Mr Lumpy' into touch! Being stubborn, or determined, whichever you prefer, proved beneficial... and the whole experience really does focus your mind on priorities. What began as a hobby to distract me from feeling feeble and bored, has blossomed into a thriving 'business', with me running workshops and courses all over Wales and Herefordshire, with exhibitions, invites to exciting events and festivals, and me running some of my own too. It also propelled me into working for The Big Skill cic, into taking a deep breath and going to meet the art group in Brecon, which led to me meeting pat from Take pART Brecon and becoming a tutor for her, and to meeting the Brecon Womens' Festival team and being involved with them and their festival... having cancer led me to not tolerate bullshit, to leave jobs that were toxic, and relationships that were negative too. Yes, it led me to having crap hairstyles and gaining weight, but it helped me not care so much, because hey, I am alive and there's so much to see and do and feel and visit and discover.. these types of cliches are the ones I do not mind!
I thought my check ups , which have lengthier times between them now, would cease at my 5 year check-up - I was excited for that. But I was told , due to the seriousness of my treatments, they wanted to keep an eye on me for a little while longer. I was a little peeved at first as NOT going to a hospital for a while would be great! But then I decided that actually, being kept an eye on is not such a bad thing...
So what else has happened?
Some sad things - my dear old stepdad died in the summer of 2015. One of my daughters experienced the dark side of a relationship, but is out the other side. Some friends I had for years fell away as my life morphed into a more creative and satisfying one.
Some happy things - my 3 daughters growing up strong, and stubborn, and making me proud. Making new friends, new connections and finding lost friends from long ago. Discovering a fun and caring and honest relationship in the arms of an old friend. Saying Yes to more things and the Universe rewarding me for that. Speaking out or up when it is needed and finding that others feel the same way. Finding myself Chair of a campaign group! Learning better confidence. Being brave.
Speaking of which - no, I wasn't brave when I had cancer. I don't think many think they are - this has been confirmed by others I spoke to with or who had cancer. I didn't feel brave. I felt pissed off with cancer, I felt fear and worry and stress and I ached for how it scared my children. I said all the way that THIS would not kill me, I was a single parent and no way was I leaving them behind, I was going to get better.
On the day I had to tell them my original diagnosis (there's a story behind that too!) I told them that the prognosis was good, that it was "not death cancer" but treatable cancer. Probably as much to reassure myself as them, but I have guilt for telling them that now, because not long after my diagnosis changed and the stakes were much higher, and what if I had died, and that meant I had lied too?
So this is how the brain goes round and round. Always something to think about!
There is no time to be brave, there is no choice you see. You can fight it, cry over it, shout about it, you can be angry and determined, you can be tired and you can be furious with what cancer does to you and yours. But it doesn't feel like bravery. Your friends and family are brave, but as the one with cancer, you are head down, against the storm that is crashing around you. You are living in ( and I have mentioned this before) a parallel world - everything in the world is carrying on as normal, yet you are both not, and are, at the same time. Often I would get really miffed that everybody else's worlds were carrying on as usual whilst I felt as though I was straddling two tight-ropes that threatened to part too far some days!
There is Cancer You, and Old You, and sometimes is is very weird to be both.
Is Old Me back? Kind of, but I'm different. How much of that is a change in perspective, how much is evolving as we age, how much is related to me being happily immersed in my art, I don't know.
I have spent some of this week reading over older entries. As I said, it is very cathartic. It is not always easy, but I am smiling. It feels like a dream, someones else's story. I want to shout out with joy that it all went away! And stick two big fingers up at cancer!! F**K YOU, cancer.
Being brave - well I am facing something very new now, and I was shocked to have had the message - having been invited to give a talk at the Abergavenny Writing Festival! Many things have led me to trying to be braver. Many things have led me to giving this talk it seems ... ;-) And I am thrilled, scared and honoured to be invited. I decided to be brave!
So I had best make some notes, and put my thoughts in some order....
I feel as though I am both talking to myself and to an audience when I write these entries - at first it was just me, then some friends were invited, and occasionally I have shared a particular post with my friends on Facebook etc. I do not know whether my writing style is just that way, or if knowing there are others looking over my shoulder has shaped my writing!
Five years ago I was sat in a room on a ward, waiting for the stem cell transplant to begin, and the room to be sealed, to be put into 'isolation' conditions, which meant no visits from my daughters as only adults could visit. I was scared (the 50/50 chances suddenly seemed very real), and pretending not to be scared so everyone else would hopefully feel a bit better, and very cross that cancer was stopping me from being with my children!
I am so glad I was writing this diary/blog/notes throughout my cancer and its treatments, even though there are gaps when I was too poorly to write, and even though I often made light of things too, because there are things I had forgotten about, sad, funny, wonderful and horrid, and to have this resource to look back on is very healing, even when it hard to read.
5 years! And we kicked 'Mr Lumpy' into touch! Being stubborn, or determined, whichever you prefer, proved beneficial... and the whole experience really does focus your mind on priorities. What began as a hobby to distract me from feeling feeble and bored, has blossomed into a thriving 'business', with me running workshops and courses all over Wales and Herefordshire, with exhibitions, invites to exciting events and festivals, and me running some of my own too. It also propelled me into working for The Big Skill cic, into taking a deep breath and going to meet the art group in Brecon, which led to me meeting pat from Take pART Brecon and becoming a tutor for her, and to meeting the Brecon Womens' Festival team and being involved with them and their festival... having cancer led me to not tolerate bullshit, to leave jobs that were toxic, and relationships that were negative too. Yes, it led me to having crap hairstyles and gaining weight, but it helped me not care so much, because hey, I am alive and there's so much to see and do and feel and visit and discover.. these types of cliches are the ones I do not mind!
I thought my check ups , which have lengthier times between them now, would cease at my 5 year check-up - I was excited for that. But I was told , due to the seriousness of my treatments, they wanted to keep an eye on me for a little while longer. I was a little peeved at first as NOT going to a hospital for a while would be great! But then I decided that actually, being kept an eye on is not such a bad thing...
So what else has happened?
Some sad things - my dear old stepdad died in the summer of 2015. One of my daughters experienced the dark side of a relationship, but is out the other side. Some friends I had for years fell away as my life morphed into a more creative and satisfying one.
Some happy things - my 3 daughters growing up strong, and stubborn, and making me proud. Making new friends, new connections and finding lost friends from long ago. Discovering a fun and caring and honest relationship in the arms of an old friend. Saying Yes to more things and the Universe rewarding me for that. Speaking out or up when it is needed and finding that others feel the same way. Finding myself Chair of a campaign group! Learning better confidence. Being brave.
Speaking of which - no, I wasn't brave when I had cancer. I don't think many think they are - this has been confirmed by others I spoke to with or who had cancer. I didn't feel brave. I felt pissed off with cancer, I felt fear and worry and stress and I ached for how it scared my children. I said all the way that THIS would not kill me, I was a single parent and no way was I leaving them behind, I was going to get better.
On the day I had to tell them my original diagnosis (there's a story behind that too!) I told them that the prognosis was good, that it was "not death cancer" but treatable cancer. Probably as much to reassure myself as them, but I have guilt for telling them that now, because not long after my diagnosis changed and the stakes were much higher, and what if I had died, and that meant I had lied too?
So this is how the brain goes round and round. Always something to think about!
There is no time to be brave, there is no choice you see. You can fight it, cry over it, shout about it, you can be angry and determined, you can be tired and you can be furious with what cancer does to you and yours. But it doesn't feel like bravery. Your friends and family are brave, but as the one with cancer, you are head down, against the storm that is crashing around you. You are living in ( and I have mentioned this before) a parallel world - everything in the world is carrying on as normal, yet you are both not, and are, at the same time. Often I would get really miffed that everybody else's worlds were carrying on as usual whilst I felt as though I was straddling two tight-ropes that threatened to part too far some days!
There is Cancer You, and Old You, and sometimes is is very weird to be both.
Is Old Me back? Kind of, but I'm different. How much of that is a change in perspective, how much is evolving as we age, how much is related to me being happily immersed in my art, I don't know.
I have spent some of this week reading over older entries. As I said, it is very cathartic. It is not always easy, but I am smiling. It feels like a dream, someones else's story. I want to shout out with joy that it all went away! And stick two big fingers up at cancer!! F**K YOU, cancer.
Being brave - well I am facing something very new now, and I was shocked to have had the message - having been invited to give a talk at the Abergavenny Writing Festival! Many things have led me to trying to be braver. Many things have led me to giving this talk it seems ... ;-) And I am thrilled, scared and honoured to be invited. I decided to be brave!
So I had best make some notes, and put my thoughts in some order....
Sunday, 27 January 2013
Life, & death, & more life
Wow.
How long have I abandoned this blog?! ;)
Well, I have been busy. And tired too! But mainly getting on with ''it''.
Some STUFF has happened since last time of course, good and bad.
Mainly this - that a friend I grew close to on Macland, that K and I were friends with, the lovely Hils, has died. So cancer, you can, again, be told to fuck off!
My mother threw in my face the fact that whilst I was dealing with cancer she ''had to'' help feed my kids etc. Well, sorry I was inconveniently ill eh? I had no financial help from the council or government during my year of chemo as I had "earned too much to qualify" the previous year. As I couldn't work for most of my year of treatment, I did have to rely on my mum and stepdad, and I hated having to! When my mother gets tired and cross she lashes out verbally, and I am really not in a place to deal with that right now!
My friends and some of my family died of cancer, and I could have died too, and she chooses to bitch about the really small stuff.
Anyhoo.
So, Hils, travel well on the other side of the veil and cock a snook when you fly past my lovely :)
I have also read a lot from some people on FB about chemo - mainly they think it's shit. Well yeh, it can be, depends on how strong your mind over matter thing is I guess. I wrote the following as a response to a reasonable and rational friend, but I have had roaring rows with the fundamentalist blinkered friends, but I'll dig that particular gem out another time maybe... ;) ..........
'There are some instances where this can happen. There have been instances where it hasn't happened. It would be preferable for most patients not to have to endure chemotherapy (having been one myself I can comment on THAT )
""S - may I tell a slightly lengthy tale about MY chemo experience? Feel free to skip to the end if you wish
Having used alternative treatments, therapies, supplements etc most of my life, I found myself faced with a massively aggressive cancer, with a lump in my neck that in June was the size of the top of my thumb, but just 2 months later was the size of at least a tennis ball and was restricting the movement in my neck and sometimes, depending on which way I was lying/sleeping, affecting my breathing.
I looked into alternative methods of treating cancer whilst I waited for the test results to confirm what I already knew what I had - I just needed to know which type I had. Having recently left an alcoholic ex who spent our savings etc, and as a single mum of 3 girls with a job that covered basics but no luxuries, it seemed my options were limited. I could have bought cannabis oil, but didn't have the funds ( £3-5000 ) - ok, grow your own and then make your own oil? Yeh, if you have the time, and again an initial lay-out of funds...
I was then told I had lymphoma, and a rare & aggressive form of it.
Can I wait for treatment I wondered? having researched it on both medical and alternative sites, and reading round the subject from traditional and spiritual sources, it seemed I could easily lose my life and leave 3 kids with no parents (no, their dad can't take over as now has spiralled into living in a derelict caravan with no facilities and talks to the lizard people...another story for another time) -
I was so angry!!! And then I calmed down and realised that this could be an opportunity to practise helping to heal myself whilst utilising ALL the options available to me and using my mind to attract all the BENEFITS of treatment with none of the SHIT that many people experience!
I HAD to get into a mindset that whatever treatments I decided upon, ALL of them would help me. I HAD to survive, my kids needed me, and that was my driving force behind everything I did in my battle with cancer - I vowed to kick it up the arse.
So, I began chemotherapy. I juiced all the time. I had reflexology and meditated. I took other supplements and accepted everyone's blessings, prayers, good thoughts, love and support.
During chemo, people I knew were pleased but rather surprised at how little it affected me, ie: I still went to work, went to parties, didn't throw up etc etc ... cancer and its medicines *did* take their toll to some degree as I did start to feel more tired, but not enough to retire to bed! I was forced to go on the sick when I felt I could have carried on but I also realised my immune system needed to have some support and where I work I come into contact with all sorts of stuff, so I gave in, but not very gracefully!
The regimen was preparing me for a stem cell transplant. Fucking scary stuff. You can google the odds and stats if you want. I wanted my kids to have good odds of me being around, I was working towards this and keeping going with all my other stuff I mentioned too. The 3 weeks of the SCT, I *was* ill. But mainly because I was heartbroken to be away from my kids for 3 weeks! And I think the stress of leaving them with family & friends whilst I was in isolation made things worse.
Anyway, I am in remission, complete remission. My doctors are amazed at my progress and recovery. 3 months after the SCT they were asking if I was having help getting dressed etc - um, NO! I am driving around, organising a festival haha! KNACKERED, yes, drained from a year of stress, but being me, and returning to normal. 10 months on from the SCT and I am in f/t work, running a business on the side and ecstatic about being alive and being here for my kids!!!
So, my point is - what you believe will happen, happens. I KNEW I would get better. So I did.
I have a friend who says chemotherapy kills, end of. Well then, if that person ever had to have it, it's likely they would be killed by it! I told the Universe that chemo would be part of the way I got better and ensured I would be around for my kids.
And here I am.' "
~~~~~~~~~~~~~~
I spoke to a cancer counsellor recently, had a kind of debriefing but didn't want to book in for regular sessions... that was useful, and I can call her as and when I need her :)
I now run a craft/design business on the side!!! It has blossomed from something I took up when bored at home when I was ill, and I made a few trinkets for friends, and now I am selling at craft fairs and craft shops and receiving commissions regularly! :D
I called it FfolkyFfelt - I make items from wool by felting it ...
www.etsy.com/shop/FfolkyFfelt will give you examples of my work, a lot of which is bespoke. I am LOVING it!!! :D
We also have two new cats - Jack & Sally we call them........ they were 6 months old from the rescue centre - we took them in during November and they are just the loveliest, friendliest, floppy and cutest cats we have had!! And Seren gets on with them, Sally is friendlier to her than Jack is ;)
AND - Megan and Ben, got engaged, in Paris!! Did I mention any of this before?? Who knows, I have chemo-brain!! hahahaha! anyway he asked my permission bless him!, and took her for her 18th to Paris and proposed under the Eiffel tower.............................
And E (N) had a baby girl!!! :D
So much to tell, now I know why I need to pop in regularly haha!!
It's nearly 2am, I am off to sleep.
And I am trying to train myself to drop by more often!
How long have I abandoned this blog?! ;)
Well, I have been busy. And tired too! But mainly getting on with ''it''.
Some STUFF has happened since last time of course, good and bad.
Mainly this - that a friend I grew close to on Macland, that K and I were friends with, the lovely Hils, has died. So cancer, you can, again, be told to fuck off!
My mother threw in my face the fact that whilst I was dealing with cancer she ''had to'' help feed my kids etc. Well, sorry I was inconveniently ill eh? I had no financial help from the council or government during my year of chemo as I had "earned too much to qualify" the previous year. As I couldn't work for most of my year of treatment, I did have to rely on my mum and stepdad, and I hated having to! When my mother gets tired and cross she lashes out verbally, and I am really not in a place to deal with that right now!
My friends and some of my family died of cancer, and I could have died too, and she chooses to bitch about the really small stuff.
Anyhoo.
So, Hils, travel well on the other side of the veil and cock a snook when you fly past my lovely :)
I have also read a lot from some people on FB about chemo - mainly they think it's shit. Well yeh, it can be, depends on how strong your mind over matter thing is I guess. I wrote the following as a response to a reasonable and rational friend, but I have had roaring rows with the fundamentalist blinkered friends, but I'll dig that particular gem out another time maybe... ;) ..........
'There are some instances where this can happen. There have been instances where it hasn't happened. It would be preferable for most patients not to have to endure chemotherapy (having been one myself I can comment on THAT )
""S - may I tell a slightly lengthy tale about MY chemo experience? Feel free to skip to the end if you wish
Having used alternative treatments, therapies, supplements etc most of my life, I found myself faced with a massively aggressive cancer, with a lump in my neck that in June was the size of the top of my thumb, but just 2 months later was the size of at least a tennis ball and was restricting the movement in my neck and sometimes, depending on which way I was lying/sleeping, affecting my breathing.
I looked into alternative methods of treating cancer whilst I waited for the test results to confirm what I already knew what I had - I just needed to know which type I had. Having recently left an alcoholic ex who spent our savings etc, and as a single mum of 3 girls with a job that covered basics but no luxuries, it seemed my options were limited. I could have bought cannabis oil, but didn't have the funds ( £3-5000 ) - ok, grow your own and then make your own oil? Yeh, if you have the time, and again an initial lay-out of funds...
I was then told I had lymphoma, and a rare & aggressive form of it.
Can I wait for treatment I wondered? having researched it on both medical and alternative sites, and reading round the subject from traditional and spiritual sources, it seemed I could easily lose my life and leave 3 kids with no parents (no, their dad can't take over as now has spiralled into living in a derelict caravan with no facilities and talks to the lizard people...another story for another time) -
I was so angry!!! And then I calmed down and realised that this could be an opportunity to practise helping to heal myself whilst utilising ALL the options available to me and using my mind to attract all the BENEFITS of treatment with none of the SHIT that many people experience!
I HAD to get into a mindset that whatever treatments I decided upon, ALL of them would help me. I HAD to survive, my kids needed me, and that was my driving force behind everything I did in my battle with cancer - I vowed to kick it up the arse.
So, I began chemotherapy. I juiced all the time. I had reflexology and meditated. I took other supplements and accepted everyone's blessings, prayers, good thoughts, love and support.
During chemo, people I knew were pleased but rather surprised at how little it affected me, ie: I still went to work, went to parties, didn't throw up etc etc ... cancer and its medicines *did* take their toll to some degree as I did start to feel more tired, but not enough to retire to bed! I was forced to go on the sick when I felt I could have carried on but I also realised my immune system needed to have some support and where I work I come into contact with all sorts of stuff, so I gave in, but not very gracefully!
The regimen was preparing me for a stem cell transplant. Fucking scary stuff. You can google the odds and stats if you want. I wanted my kids to have good odds of me being around, I was working towards this and keeping going with all my other stuff I mentioned too. The 3 weeks of the SCT, I *was* ill. But mainly because I was heartbroken to be away from my kids for 3 weeks! And I think the stress of leaving them with family & friends whilst I was in isolation made things worse.
Anyway, I am in remission, complete remission. My doctors are amazed at my progress and recovery. 3 months after the SCT they were asking if I was having help getting dressed etc - um, NO! I am driving around, organising a festival haha! KNACKERED, yes, drained from a year of stress, but being me, and returning to normal. 10 months on from the SCT and I am in f/t work, running a business on the side and ecstatic about being alive and being here for my kids!!!
So, my point is - what you believe will happen, happens. I KNEW I would get better. So I did.
I have a friend who says chemotherapy kills, end of. Well then, if that person ever had to have it, it's likely they would be killed by it! I told the Universe that chemo would be part of the way I got better and ensured I would be around for my kids.
And here I am.' "
~~~~~~~~~~~~~~
I spoke to a cancer counsellor recently, had a kind of debriefing but didn't want to book in for regular sessions... that was useful, and I can call her as and when I need her :)
I now run a craft/design business on the side!!! It has blossomed from something I took up when bored at home when I was ill, and I made a few trinkets for friends, and now I am selling at craft fairs and craft shops and receiving commissions regularly! :D
I called it FfolkyFfelt - I make items from wool by felting it ...
www.etsy.com/shop/FfolkyFfelt will give you examples of my work, a lot of which is bespoke. I am LOVING it!!! :D
We also have two new cats - Jack & Sally we call them........ they were 6 months old from the rescue centre - we took them in during November and they are just the loveliest, friendliest, floppy and cutest cats we have had!! And Seren gets on with them, Sally is friendlier to her than Jack is ;)
AND - Megan and Ben, got engaged, in Paris!! Did I mention any of this before?? Who knows, I have chemo-brain!! hahahaha! anyway he asked my permission bless him!, and took her for her 18th to Paris and proposed under the Eiffel tower.............................
And E (N) had a baby girl!!! :D
So much to tell, now I know why I need to pop in regularly haha!!
It's nearly 2am, I am off to sleep.
And I am trying to train myself to drop by more often!
Saturday, 15 September 2012
Transformations, ponderings, and some fun too! Or, why is a raven like a writing desk?
I have to say, it's been a blast!
And thank you again to everyone I have shared the summer with :)
Pam and I went to see another Shakespeare play over in Glanusk - watching plays out of doors just adds to the whole atmosphere (and being out doors seemed to be the theme for this summer) - and we took a bottle of pink bubbly left from my birthday and sat in the sun and laughed a lot :)
The Girls were out and about with friends and sleepovers here there and everywhere and having almost too much fun too and that was a joy to see, and I must be better because they also began to squabble a bit too ;) And now D is in juniors and B had begun GSCE's, and M has finished AS's and left and gone to college to train as a nanny/nursery nurse and is much happier!
Coffees and chats and food and sunshine in my garden, under the one remaining gazebo after the party ... (it's still there now and has done us proud all summer!) ... with friends seemed to be the way to go and it's been bliss.
Then the run-up to the Green Man (GM) festi, people booking in and out of rotas and emailing arrival dates, all busy stuff. And although the weather was pretty good during the festival, because we had so much rain all year, as soon as the public descended, certain areas were just 6 inches of liquid mud haha! Hoorah for the new wellies standing up to it and Deri's wellies being *just* long enough to be able to trudge through it! Did some work for the GM admin and had a hoot every night back at the crew camping and sat round the fire - and walking home to my warm bed later ;) Deri stayed at my mum's Fri night, so I went back on site at 5pm and met up with friends and got rather merry and bumped into my eldest having a hoot with her friends and b/f, and I bought a silly hat (it is compulsory to buy a silly hat every year, preferably out of felt!) and then some friends left and we met up with other friends who were also crew and had a drink and a dance and more sitting round fires and then it was 5am and we crawled off to bed very merry and very happy after such a fun night!
It was like one big happy family and reminded me of things I have been aiming for and showed to me that there were certain things that will get done better if there is a group of you...
And made a New friend too. A tall, dark, drum playing, fresh food foraging, delicious meal cooking, gentle and funny, wild man of the woods, dog walking and interesting story sharing, wild man of the woods .... and we spent 2 weeks together, and maybe we will never meet again, but that time confirmed to me what could be done and where I wanted to travel towards ... and the crew also had certain women I met, some for the 2nd time, some for the 1st, who were an inspiration in many ways. And each one of them was so happy that I was there, well, and happy, and they celebrated that in different ways.
And this year, the Green Man statue that they burn at the end of the festival, had little wish tags inside that you could write on... and I wished hard when I wrote mine :))
So, gradually everyone packed up, some stayed longer than others, and my new friend stayed until I went back to work. Back to work!! Yet, it's not like work, because there are so many wonderful people there, doing a lot of wonderful things, and it's a joy to be part of that and to help do good things too, and yes there are other projects in life that I will take forward soon, but *this* is a damned good one too and one that I hope will be part of my future for some time to come!
I have been thinking too, that it's time to take up more opportunities that are offered, to move forward towards the goals that I really want, and to generally have more fun, whether in play or work or creativity etc ;) And I even mentioned to one friend that I could do with hiringa skip, so that I could properly de-clutter the house and sheds! haha! Now *that* would take some time! BUT, it needs doing, whether we stay here or not, so there's room for what's important....
When I have sat out in the garden, butterflies keep landing on me, sitting on a leg, or on my arm... and dragonflies keep being fund fluttering around the house, and a bat was stuck in the bathroom for a while until I caught it, and a robin flew in too .... so I wondered what they were all telling me, and looked it up!
=
Bat
A symbol of rebirth. It symbolizes the need for a
ritualistic death of some way of life that no longer
suits your new growth pattern. If you resist your destiny,
it may become a long, drawn out or painful death.
The universe is always asking you to grow and
become your future.
Butterfly
Is a very spiritual bug and represents the
resents of of good spirits. Butterflys signal
change, metamorphosis, balance, harmony, grace,
peace, beauty and spirituality. It is a good sign.
It is the mind and the ability to know how
and when to change.
Dragonfly
Dragonfly is the essence of the winds of change,
the messages of wisdom and enlightenment,
and the communications from the elemental world.
This elemental world is made up of the tiny spirits
of plants,and the elements air, fire and water.
This world is full of nature spirits.
Dragonfly medicine always beckons you
to seek out the parts of your habits
which you need to change.
Robin
Brings happiness, good health, and love to families.
Robin is a proud bird, clean, and well dressed.
She is a good reminder of virtues worth emulating
and a good role model for humans.
Hmmm....... anyone else see a pattern there?! haha!
So then Kerry and I get to talking, more seriously than before, about actually doing something about creating the sustainable community that we have wanted for ages. ie: a small group of us, sharing land with our own private space and some communal areas, growing and eating our own produce, running workshops to create more income, keeping some or all of our current work depending on what/where it is etc, being able to create more of our crafts, those that do healing or therapies could have more space too, and generally creating a better environment for our kids. And we have found the first possibility of where we may be able to do such a thing, and looking into the others too! We don't want a commune, haha! But we DO want a better quality of life and a more natural rhythm too.
And then some fun things presented themselves too ... to go away without kiddies next weekend to a small festival, utilise the healing field, and have free entry by helping in the cafe for 10 hours, and have a lift with a friend! Up in Lincolnshire, a first for me! And the autumn equinox falls on that weekend .... a time of gratitude for what is, of re-balancing where required..
The next weekend is me and the kiddies and friends with theirs, all ages, off to the mini festival in the Forest of Dean :))
And this week, and again on the 25th, I had/am having bloods .... this week was at Nevill Hall... all fine! Same again at the Heath in 2 weeks one hopes ;)
It doesn't stop all the 'What-if's', or the occasional flash of guilt that you're having fun and someone else is in the middle of chemo, or a different crisis, but if you're alive, you have to make the most of it, whether quietly, loudly, or in a busy way or in a studious way, or you can laugh or moan or whatever you fancy.... AND you can help that other person TOO ... anyhoo, this is the way *I* am doing it, and I very much enjoy spending it with all of YOU xxx
And thank you again to everyone I have shared the summer with :)
Pam and I went to see another Shakespeare play over in Glanusk - watching plays out of doors just adds to the whole atmosphere (and being out doors seemed to be the theme for this summer) - and we took a bottle of pink bubbly left from my birthday and sat in the sun and laughed a lot :)
The Girls were out and about with friends and sleepovers here there and everywhere and having almost too much fun too and that was a joy to see, and I must be better because they also began to squabble a bit too ;) And now D is in juniors and B had begun GSCE's, and M has finished AS's and left and gone to college to train as a nanny/nursery nurse and is much happier!
Coffees and chats and food and sunshine in my garden, under the one remaining gazebo after the party ... (it's still there now and has done us proud all summer!) ... with friends seemed to be the way to go and it's been bliss.
Then the run-up to the Green Man (GM) festi, people booking in and out of rotas and emailing arrival dates, all busy stuff. And although the weather was pretty good during the festival, because we had so much rain all year, as soon as the public descended, certain areas were just 6 inches of liquid mud haha! Hoorah for the new wellies standing up to it and Deri's wellies being *just* long enough to be able to trudge through it! Did some work for the GM admin and had a hoot every night back at the crew camping and sat round the fire - and walking home to my warm bed later ;) Deri stayed at my mum's Fri night, so I went back on site at 5pm and met up with friends and got rather merry and bumped into my eldest having a hoot with her friends and b/f, and I bought a silly hat (it is compulsory to buy a silly hat every year, preferably out of felt!) and then some friends left and we met up with other friends who were also crew and had a drink and a dance and more sitting round fires and then it was 5am and we crawled off to bed very merry and very happy after such a fun night!
It was like one big happy family and reminded me of things I have been aiming for and showed to me that there were certain things that will get done better if there is a group of you...
And made a New friend too. A tall, dark, drum playing, fresh food foraging, delicious meal cooking, gentle and funny, wild man of the woods, dog walking and interesting story sharing, wild man of the woods .... and we spent 2 weeks together, and maybe we will never meet again, but that time confirmed to me what could be done and where I wanted to travel towards ... and the crew also had certain women I met, some for the 2nd time, some for the 1st, who were an inspiration in many ways. And each one of them was so happy that I was there, well, and happy, and they celebrated that in different ways.
And this year, the Green Man statue that they burn at the end of the festival, had little wish tags inside that you could write on... and I wished hard when I wrote mine :))
So, gradually everyone packed up, some stayed longer than others, and my new friend stayed until I went back to work. Back to work!! Yet, it's not like work, because there are so many wonderful people there, doing a lot of wonderful things, and it's a joy to be part of that and to help do good things too, and yes there are other projects in life that I will take forward soon, but *this* is a damned good one too and one that I hope will be part of my future for some time to come!
I have been thinking too, that it's time to take up more opportunities that are offered, to move forward towards the goals that I really want, and to generally have more fun, whether in play or work or creativity etc ;) And I even mentioned to one friend that I could do with hiringa skip, so that I could properly de-clutter the house and sheds! haha! Now *that* would take some time! BUT, it needs doing, whether we stay here or not, so there's room for what's important....
When I have sat out in the garden, butterflies keep landing on me, sitting on a leg, or on my arm... and dragonflies keep being fund fluttering around the house, and a bat was stuck in the bathroom for a while until I caught it, and a robin flew in too .... so I wondered what they were all telling me, and looked it up!
=
Bat
A symbol of rebirth. It symbolizes the need for a
ritualistic death of some way of life that no longer
suits your new growth pattern. If you resist your destiny,
it may become a long, drawn out or painful death.
The universe is always asking you to grow and
become your future.
Butterfly
Is a very spiritual bug and represents the
resents of of good spirits. Butterflys signal
change, metamorphosis, balance, harmony, grace,
peace, beauty and spirituality. It is a good sign.
It is the mind and the ability to know how
and when to change.
Dragonfly
Dragonfly is the essence of the winds of change,
the messages of wisdom and enlightenment,
and the communications from the elemental world.
This elemental world is made up of the tiny spirits
of plants,and the elements air, fire and water.
This world is full of nature spirits.
Dragonfly medicine always beckons you
to seek out the parts of your habits
which you need to change.
Robin
Brings happiness, good health, and love to families.
Robin is a proud bird, clean, and well dressed.
She is a good reminder of virtues worth emulating
and a good role model for humans.
Hmmm....... anyone else see a pattern there?! haha!
So then Kerry and I get to talking, more seriously than before, about actually doing something about creating the sustainable community that we have wanted for ages. ie: a small group of us, sharing land with our own private space and some communal areas, growing and eating our own produce, running workshops to create more income, keeping some or all of our current work depending on what/where it is etc, being able to create more of our crafts, those that do healing or therapies could have more space too, and generally creating a better environment for our kids. And we have found the first possibility of where we may be able to do such a thing, and looking into the others too! We don't want a commune, haha! But we DO want a better quality of life and a more natural rhythm too.
And then some fun things presented themselves too ... to go away without kiddies next weekend to a small festival, utilise the healing field, and have free entry by helping in the cafe for 10 hours, and have a lift with a friend! Up in Lincolnshire, a first for me! And the autumn equinox falls on that weekend .... a time of gratitude for what is, of re-balancing where required..
The next weekend is me and the kiddies and friends with theirs, all ages, off to the mini festival in the Forest of Dean :))
And this week, and again on the 25th, I had/am having bloods .... this week was at Nevill Hall... all fine! Same again at the Heath in 2 weeks one hopes ;)
It doesn't stop all the 'What-if's', or the occasional flash of guilt that you're having fun and someone else is in the middle of chemo, or a different crisis, but if you're alive, you have to make the most of it, whether quietly, loudly, or in a busy way or in a studious way, or you can laugh or moan or whatever you fancy.... AND you can help that other person TOO ... anyhoo, this is the way *I* am doing it, and I very much enjoy spending it with all of YOU xxx
Thursday, 2 August 2012
Festival of Friends? ;)
WOW ............. that was an amazing day - 14 of us amongst 6,500 people in Bute Park, so many weird and wonderful outfits, including a giant woopie cushion...... and with so many messages of love and hope/remembrance pinned to all our backs - J shot off in the runners group, the rest of us safe in the walkers haha! I still walk my dog but for much shorted walk these days, so by the 2nd kilometre marker my feet were already aching! And as you can see, I had an early birthday pressie Tshirt from K! I was SO proud of all my friends who had come on the day, or donated, or organised, or supported, in so many different ways ... and then, going through the finishing line together, with my daughter Broni, hand-in-hand... well, that was one very emotional moment, as though a line had been drawn under the last 12 months . . . and to finish it with K, who has had her own cancer journey... important milestone for us both, and C and her friend B too, from 'Macland', and somewhere in the crowd (we lost loads of people!! ) was C, cheering us on :)
I was on a high, albeit an exhausted one, for days afterwards!
The following weekend was my birthday. It turned into something of a mini festival, with some people camping Fri to Mon, so we warmed up Fri night and had the party Sat night... tents and campers filled the field, gazebos and tealights and a fire in the garden, with my rum punch (heh heh) and friends and our DJ and lanterns too ... it was STUNNING. Lots of people have said how it must be the first of many "Festival Cariad's" haha!! I found it so wonderful and very emotional, that (most of) my favourite people were all in the same place at the same time, and that how gorgeous each of them are, was obvious to all :) I am blessed with beautiful friends, and LOVED the whole weekend. The best gift was all of my friends being there, and then I was spoiled by some stunning and touching gifts, some of which blew me away! Folk put a lot of thought into it all, so let me say THANK YOU again .x.x.x.
I had a good friend message me yesterday, apologising for 'not being around enough' .. but as I said to her, it IS the thought that counts, because all that positive intent builds up and up and it was expressed at my party in one huge wave of love that was palpable ... the atmosphere fairly crackled with positivity and love and I'm still riding on it now - and which was the same atmosphere at the Race for Life, I was completely bowled over when Claire formed the team idea and I was so proud and humbled by my friends .. AND, the love and good thoughts from everyone I know, coupled with MY intentions and damned stubbornness, and refusal to leave my 3 daughters behind!, is what saw me through this last 12 months ... as Jung said, "I am not what happened to me, I am what I choose to become". So here's to love, and visualisation, and being a stubborn cow, and kicking cancer's arse.
Sunday, 1 July 2012
Deeeeeep, man
So, Monday was Stitches Off Day. Hoorah! Felt REALLY weird saying goodbye to the nurses coz it will be September when I go back!
Tuesday - Em M took me off to the Heath for my post-transplant chat. They took millions of tubes of blood and asked me how I felt and could I rate myself on their %age chart of activity. I am over 80% which is apparently Very Good for 3 months post-transplant. 70% would have meant I needed help getting dressed or something.......what the heck would 40% have meant?!
Anyway, it's been nearly a week but it's still AMAZING to get into a proper, deep bath, and be able to do something as simple as lie down in it! I can wash messily, splash water around, let the flannel drip down my front... no guarding of the tubes, no careful dabbing and wiping of my body anymore! I can just wallow and splash and wiggle and soak to my heart's content! And it feels FABULOUS!!
...all those little things we take for granted every day, from being able to wash, to being able to see your kids, to being able to relax a little, to being able to think ahead *fully* ... we all need to appreciate all the good stuff we have, and not put up with any bad stuff!
Talking of which... Jo came over Friday night and I got completely trolleyed :)) We had a hoot!! I do love my friends LOTS ;)
The lovely Hils mentioned earlier about the joy of many visitors, and how the lack of them was quite sad, as if having friends over kept cancer away .... and actually, her words do ring true on some levels... after all, friends = positivity, and being positive is good for our health, and thinking in a positive way does have some good kicking-cancer-up-the-arse qualities ... ;)
Tuesday - Em M took me off to the Heath for my post-transplant chat. They took millions of tubes of blood and asked me how I felt and could I rate myself on their %age chart of activity. I am over 80% which is apparently Very Good for 3 months post-transplant. 70% would have meant I needed help getting dressed or something.......what the heck would 40% have meant?!
Anyway, it's been nearly a week but it's still AMAZING to get into a proper, deep bath, and be able to do something as simple as lie down in it! I can wash messily, splash water around, let the flannel drip down my front... no guarding of the tubes, no careful dabbing and wiping of my body anymore! I can just wallow and splash and wiggle and soak to my heart's content! And it feels FABULOUS!!
...all those little things we take for granted every day, from being able to wash, to being able to see your kids, to being able to relax a little, to being able to think ahead *fully* ... we all need to appreciate all the good stuff we have, and not put up with any bad stuff!
Talking of which... Jo came over Friday night and I got completely trolleyed :)) We had a hoot!! I do love my friends LOTS ;)
The lovely Hils mentioned earlier about the joy of many visitors, and how the lack of them was quite sad, as if having friends over kept cancer away .... and actually, her words do ring true on some levels... after all, friends = positivity, and being positive is good for our health, and thinking in a positive way does have some good kicking-cancer-up-the-arse qualities ... ;)
Saturday, 23 June 2012
Silly surgeons!
I was *sure* I hadn't had a stitch put in/on after surgery, but thought maybe it all happened really quickly and I missed it?
On Wednesday, I thought I would change the bloodied dressing as they had given me a spare... but just in case there wasn't a stitch, I peeled away the corner very carefully......
Hmmm , that'll just be a blobby bloody hole in my boob then.
Quick call to my nurses on the Windsor Suite .. 'are you sure??' Yep! So I popped down and they put some steri-strips on, and go back Monday to see how it's getting on and when they can come off.
I want my deep bath!! AND, what would it have healed like if I hadn't checked?! YUK!
On nicer news, Megz has adopted the dog she saw at the rescue centre, he is called Tumble and Seren is tolerating him rather well! He's 2, and a Yorkie/Shuitsu cross!
On Wednesday, I thought I would change the bloodied dressing as they had given me a spare... but just in case there wasn't a stitch, I peeled away the corner very carefully......
Hmmm , that'll just be a blobby bloody hole in my boob then.
Quick call to my nurses on the Windsor Suite .. 'are you sure??' Yep! So I popped down and they put some steri-strips on, and go back Monday to see how it's getting on and when they can come off.
I want my deep bath!! AND, what would it have healed like if I hadn't checked?! YUK!
On nicer news, Megz has adopted the dog she saw at the rescue centre, he is called Tumble and Seren is tolerating him rather well! He's 2, and a Yorkie/Shuitsu cross!
Tuesday, 19 June 2012
Bye bye Boob Tube!!
Well, yesterday saw me arrive bleary-eyed at the hospital at 8 am. Mostly excited also slightly nervous (I remember the Hickman line going in and it wasn't pleasant!)
So was very pleased when they said I was first on the list :)
Mr Blackett is the very good and very swear-y consultant, and he came up to get me to sign consent etc... on the line where it asked him what was benefit of operation, he wrote "to get rid of line!!" heehee!
So, whisked off to theatre, there by 9.15, lots and lots of injections around the area to numb it all. He said, 'yours has been in a long time, so some of it might be stuck to tissue, if it is I'll just cut it away' BLEUGH, don't tell me, just do it!!
So yes, some WAS stuck, and there was a lot of tugging and pulling and maybe my boob would be pulled off? The nurses came over then and held my hands! But only 15 mins later, it was done, and gone, and thrown in the bin, hoorah!
Back on the ward by 10, the private ward, so therefore I had coffee and toast served to me haha! Told I could go home in 1 hour as long as I had a wee and didn't faint etc. Felt fine, called mum to tell her to please come pick me up at 11, sent texts to my friends, and ate toast :))
It was sore and tingly for a little while, but hardly anything by the afternoon. I went to bed at midday and slept til 4.30 (Deri was being picked up by friends and going for tea etc) and that made me feel better too :)
HOORAH!! Hickman boob tube, you're history! Oh, the relief! And no more awkward pouches to get in the way or tuck into your bra, no more dangling tubes getting in the way! Next week after stitches are out, DEEP baths!!
WHHOOHOOOOO!
So was very pleased when they said I was first on the list :)
Mr Blackett is the very good and very swear-y consultant, and he came up to get me to sign consent etc... on the line where it asked him what was benefit of operation, he wrote "to get rid of line!!" heehee!
So, whisked off to theatre, there by 9.15, lots and lots of injections around the area to numb it all. He said, 'yours has been in a long time, so some of it might be stuck to tissue, if it is I'll just cut it away' BLEUGH, don't tell me, just do it!!
So yes, some WAS stuck, and there was a lot of tugging and pulling and maybe my boob would be pulled off? The nurses came over then and held my hands! But only 15 mins later, it was done, and gone, and thrown in the bin, hoorah!
Back on the ward by 10, the private ward, so therefore I had coffee and toast served to me haha! Told I could go home in 1 hour as long as I had a wee and didn't faint etc. Felt fine, called mum to tell her to please come pick me up at 11, sent texts to my friends, and ate toast :))
It was sore and tingly for a little while, but hardly anything by the afternoon. I went to bed at midday and slept til 4.30 (Deri was being picked up by friends and going for tea etc) and that made me feel better too :)
HOORAH!! Hickman boob tube, you're history! Oh, the relief! And no more awkward pouches to get in the way or tuck into your bra, no more dangling tubes getting in the way! Next week after stitches are out, DEEP baths!!
WHHOOHOOOOO!
Friday, 15 June 2012
Well I never. At least that's my story and I'm sticking to it ...
Blimey I have left it a LONG time between posts!!!
It's possibly down to it being a kind of ''in limbo'' time, waiting, waiting, waiting .... waiting for appointments, scans, ops, results... always with this cancer malarkey it is about waiting... waiting for your brain to catch up with the latest information from your consultant, waiting for that niggle in your arm/back/leg/head to top, because if it doesn't, is THAT cancer too?? Waiting for news, for the chance to REALLY relax, waiting for the endless round of swirling thoughts to STOP. Waiting to hear it is gone, it's better, you're clear... even though you know if & when that happens, you will always wait anyway, keeping a weather eye out for any ...any what?? Symptoms? I had none. None. I found a lump and I didn't like how it *felt* and I nagged my GP, then had to demand, but if it hadn't protruded from my neck, if it had hidden, what then?
And I guess this thought process is also partly due to friends, new and old, who are also on this journey, and I am frustrated and concerned for them too. Cancer is a bastard. For the person with cancer, and for everyone who knows them. It screws with you, and there's headfucks as well as the physical stuff. So, screw YOU, cancer!
Unremarkable weeks since last post, insofar as my weekly tube flushing goes :) Waiting for date for PET scan, and date to have Hickman line removed. And the 26th June seeming to take AGES to arrive - the date I am due to meet the stem cell consultant, and get my results of the PET scan. What was wonderful was me calling the Windsor suite on Thursday last week, needing to order repeat prescription...they asked if I was going to town anyway or making special journey in to pick it up later? Well, the latter, but that's ok...... 'no its ok' says Jodie, 'Kay is driving past yours later, she'll drop off the tablets for you' ....... WOW, talk about 1-2-1 service from the NHS!!! :))
Suddenly, last week, I think on that very Thursday, a phonecall from the Heath.... come in on the 11th for the PET. Yay! Went in, and greeted with ''sorry, the machine isn't working, but we are fixing it, hopefully in time for you to be scanned, do you want to go off and find a coffee?'' Nope, coz if I'm not in the waiting room when/if it is fixed, then I miss out on a scan and I can't be late as have a 7 yr old to pick up from school which is at least an hour's drive away, thanks :))
So we lurk, my mum and I, and only 1 hour later, I'm called in. Have my own special isolation room with HEAVY door to get injected with radioactive dye behind and for the nurse to then run out... and I am tired, so rather than read, I curled up on the huge bed/chair thingy and have a nap :) After all, I have 90 minutes to kill. Woken up by amused nurse to swap to scan room, 20 minutes in and out the giant polo on the slidey bed, and the guy says, 'should have these images back to the doctor within 48 hours'... that's been said before but I have never had them until official appointment, so nod and count down the days until the 26th!!
Tuesday - get letter.... hickman due out on the 2nd July - YAY!!!!
Wednesday, off I go to Windsor suite for my bloods and tube flushing. Sandra the staff nurse is looking rather cheerful and grinning - must be a good day at work methinks! I sit down and tell them I have an appointment for the 2nd for the hickman. 'Hmm' says she, 'you don't want to wait THAT long!'. She is in the middle of fitting a cannula in a guy's arm... and spins round, without stopping her work, and says, ''thumbs up!''
What is? The weather?? I look blank obviously, as she then says. " I asked the Heath to fax the results over, and it's good, it's clear!"
WHAT??
WOW!!
I'm not supposed to know til the 26th........hang on.....are you sure? Is this right, me, I am ok?? So I ask, ''does this mean I can open the wine tonight haha?'' YES! she says, and drags me off to side room to do bloods/flushing. Registrar comes in and asks Sandra if I know the new...yes, she says she couldn't wait to tell me! Registrar then tells me that the scan shows that I am in complete remission, so no need to come back until September, and isn't it great news? Yes, but I am in shock and don't know what to do except grin stupidly! She goes off to confirm Sept appointment, and I ask Sandra, ''does this mean I can call my mother and celebrate?'' Hahaha what am I like? ;)
So Sandra then goes to call surgeon's department as she thinks there's been a cancellation, yes, Iris (don't know who you are,but thank you!!) has had to cancel as her doc wants to do more treatment, so I am booked in for next Monday the 18th!
WOW.
I leave in a bit of a daze, book app't for 12th Sept (what will I do on Wednesdays til then?!). I text my teens. I try to call my mother... she's in Devon with Bryan and there's no signal at that moment, haha typical. I am due at Tash's for lunch with her & Em M, and to do a reiki session. I drive off in the wrong direction. I decide I can't do Reiki today!! I stop, and try to send group texts but finger don't work. I get to Tash's and we're all nearly in tears with relief and joy! I call in to see Jo, much shrieking. I call mum and get through....can't believe it. When I pick Deri up from school, I tell her the doctor says I am better, no more lumps. 'Oh goody! We're going to the zoo!' HAHAHAHA, how could my news top that? ;) I post my best facebook status that evening!!!!! I opened wine and did NOT cook.... a takeaway was order of the day, and if we have to eat baked beans the rest of the week, well, fuck it!!
I am not sure whether to laugh or cry or dance or collapse in relief! I feel as though I can actually relax, but also, will September bring more good news or not?! I have felt so well, apart from fatigue, that I *knew* the news would be good, but still had WHAT-IF'S. And I suppose that will take a long time to shift, if at all? But, I can be stubborn sometimes, and I was stubborn about NOT leaving my girls alone, and so long may that continue ;) And everyone's responses.........wow...... my friends have cried and hollered and whooped and I am overwhelmed by the strength of their emotions, and I feel sad that THEY have all had to carry this tension around with them too, but I am so proud to have them as my friends, and each one has been a rock! As one friend said, it was the love that did it. And she is right :))
WHOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So, I had to go for my pre-op assessment today. So I called into Windsor suite first to give the team a card, and a homemade brooch each, and they liked my card coz I said they were amazing and they got a bit emotional too haha! :))
So, Hickman out on Monday, it's a local not general, so out again same day - 10 days later, stitches out at Windsor suite, then I let loose, weird!!! Nice weird, but still......... it's been endless, and now it isn't. Whirly Brain Syndrome ... WBS, hmm, may need to improve that so we get a good acronym out of it ;)
What? I dunno, don't ask me, I'm only good for grinning right now, hope you're not expecting too much sense...??
It's possibly down to it being a kind of ''in limbo'' time, waiting, waiting, waiting .... waiting for appointments, scans, ops, results... always with this cancer malarkey it is about waiting... waiting for your brain to catch up with the latest information from your consultant, waiting for that niggle in your arm/back/leg/head to top, because if it doesn't, is THAT cancer too?? Waiting for news, for the chance to REALLY relax, waiting for the endless round of swirling thoughts to STOP. Waiting to hear it is gone, it's better, you're clear... even though you know if & when that happens, you will always wait anyway, keeping a weather eye out for any ...any what?? Symptoms? I had none. None. I found a lump and I didn't like how it *felt* and I nagged my GP, then had to demand, but if it hadn't protruded from my neck, if it had hidden, what then?
And I guess this thought process is also partly due to friends, new and old, who are also on this journey, and I am frustrated and concerned for them too. Cancer is a bastard. For the person with cancer, and for everyone who knows them. It screws with you, and there's headfucks as well as the physical stuff. So, screw YOU, cancer!
Unremarkable weeks since last post, insofar as my weekly tube flushing goes :) Waiting for date for PET scan, and date to have Hickman line removed. And the 26th June seeming to take AGES to arrive - the date I am due to meet the stem cell consultant, and get my results of the PET scan. What was wonderful was me calling the Windsor suite on Thursday last week, needing to order repeat prescription...they asked if I was going to town anyway or making special journey in to pick it up later? Well, the latter, but that's ok...... 'no its ok' says Jodie, 'Kay is driving past yours later, she'll drop off the tablets for you' ....... WOW, talk about 1-2-1 service from the NHS!!! :))
Suddenly, last week, I think on that very Thursday, a phonecall from the Heath.... come in on the 11th for the PET. Yay! Went in, and greeted with ''sorry, the machine isn't working, but we are fixing it, hopefully in time for you to be scanned, do you want to go off and find a coffee?'' Nope, coz if I'm not in the waiting room when/if it is fixed, then I miss out on a scan and I can't be late as have a 7 yr old to pick up from school which is at least an hour's drive away, thanks :))
So we lurk, my mum and I, and only 1 hour later, I'm called in. Have my own special isolation room with HEAVY door to get injected with radioactive dye behind and for the nurse to then run out... and I am tired, so rather than read, I curled up on the huge bed/chair thingy and have a nap :) After all, I have 90 minutes to kill. Woken up by amused nurse to swap to scan room, 20 minutes in and out the giant polo on the slidey bed, and the guy says, 'should have these images back to the doctor within 48 hours'... that's been said before but I have never had them until official appointment, so nod and count down the days until the 26th!!
Tuesday - get letter.... hickman due out on the 2nd July - YAY!!!!
Wednesday, off I go to Windsor suite for my bloods and tube flushing. Sandra the staff nurse is looking rather cheerful and grinning - must be a good day at work methinks! I sit down and tell them I have an appointment for the 2nd for the hickman. 'Hmm' says she, 'you don't want to wait THAT long!'. She is in the middle of fitting a cannula in a guy's arm... and spins round, without stopping her work, and says, ''thumbs up!''
What is? The weather?? I look blank obviously, as she then says. " I asked the Heath to fax the results over, and it's good, it's clear!"
WHAT??
WOW!!
I'm not supposed to know til the 26th........hang on.....are you sure? Is this right, me, I am ok?? So I ask, ''does this mean I can open the wine tonight haha?'' YES! she says, and drags me off to side room to do bloods/flushing. Registrar comes in and asks Sandra if I know the new...yes, she says she couldn't wait to tell me! Registrar then tells me that the scan shows that I am in complete remission, so no need to come back until September, and isn't it great news? Yes, but I am in shock and don't know what to do except grin stupidly! She goes off to confirm Sept appointment, and I ask Sandra, ''does this mean I can call my mother and celebrate?'' Hahaha what am I like? ;)
So Sandra then goes to call surgeon's department as she thinks there's been a cancellation, yes, Iris (don't know who you are,but thank you!!) has had to cancel as her doc wants to do more treatment, so I am booked in for next Monday the 18th!
WOW.
I leave in a bit of a daze, book app't for 12th Sept (what will I do on Wednesdays til then?!). I text my teens. I try to call my mother... she's in Devon with Bryan and there's no signal at that moment, haha typical. I am due at Tash's for lunch with her & Em M, and to do a reiki session. I drive off in the wrong direction. I decide I can't do Reiki today!! I stop, and try to send group texts but finger don't work. I get to Tash's and we're all nearly in tears with relief and joy! I call in to see Jo, much shrieking. I call mum and get through....can't believe it. When I pick Deri up from school, I tell her the doctor says I am better, no more lumps. 'Oh goody! We're going to the zoo!' HAHAHAHA, how could my news top that? ;) I post my best facebook status that evening!!!!! I opened wine and did NOT cook.... a takeaway was order of the day, and if we have to eat baked beans the rest of the week, well, fuck it!!
I am not sure whether to laugh or cry or dance or collapse in relief! I feel as though I can actually relax, but also, will September bring more good news or not?! I have felt so well, apart from fatigue, that I *knew* the news would be good, but still had WHAT-IF'S. And I suppose that will take a long time to shift, if at all? But, I can be stubborn sometimes, and I was stubborn about NOT leaving my girls alone, and so long may that continue ;) And everyone's responses.........wow...... my friends have cried and hollered and whooped and I am overwhelmed by the strength of their emotions, and I feel sad that THEY have all had to carry this tension around with them too, but I am so proud to have them as my friends, and each one has been a rock! As one friend said, it was the love that did it. And she is right :))
WHOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So, I had to go for my pre-op assessment today. So I called into Windsor suite first to give the team a card, and a homemade brooch each, and they liked my card coz I said they were amazing and they got a bit emotional too haha! :))
So, Hickman out on Monday, it's a local not general, so out again same day - 10 days later, stitches out at Windsor suite, then I let loose, weird!!! Nice weird, but still......... it's been endless, and now it isn't. Whirly Brain Syndrome ... WBS, hmm, may need to improve that so we get a good acronym out of it ;)
What? I dunno, don't ask me, I'm only good for grinning right now, hope you're not expecting too much sense...??
Sunday, 27 May 2012
Whilst the cats are away...well, kids anyway...
Last Wednesday was unremarkable as far as hossie check goes, didn't want my bloods either so left early, which was useful as had to finish getting D and B sorted for their hols, and drop off at mums... they were all staying there to set off on early flight the next morning :)) Very exciting!
Which meant a week of complete spoiling, and it was wonderful! I woke up around 10.30 each morning... blissful lie-ins! I had a visit from Lou, and Pam took me out to dinner and Em took me out for lunch :) M and B were around half the time and we had some nice times together too :) And this weekend B has strimmed and mowed - been an absolute star ... and then Mark from next door offered to spray the nettles with duck-friendly spray and help find some materials to make raised beds for beg too (he lives next door and works on the estate - always handy!)
This Wed I had bloods and all ok again, plus picked up a Macmillan grant application form. Apparently my hickman referral was 'lost' by someone's secretary so they did a new one, so maybe THIS week I'll get a date! ;)
It was my penultimate night with no kiddies, so had a little G & T sat out under the tree :)) The glorious weather is just superb and I am feeling quite perky and getting into summer party mode - we had our first bonfire of the season last night :)
It's mixed blessings as I have friends with new diagnosis, friends facing scans, friends whose dog has died... so I am sending them all huge hugs and love too. Life IS a roller coaster, I don't care what anyone else may say!
And then Friday morning, picked up my girlies!!!!!!!! :D Lots of cwtchs and lots of holiday tales especially from Deri! ;)
This eve, Lou came down again, and we were off to watch "As you like it" by a company called Come Rain or Shine (always perform outside) on Glanusk, and meeting Gez n Em too. Deri came along and LOVED it which was great coz it lasted 3 hours and she was transfixed by it all, once she had asked me a few questions about who was who haha! And very wonderfully, we had 2 free tickets given to us by Mark's brother! It was great show and the performers were fab. Must go to the next one :)) Lou had to disappear to get back for baby Vince, and I put Deri to bed and went over to Gez and Em's for a nightcap :)) So now it's 2 am and I should go to bed :))
Life is feeling good again, so it had better frigging stay that way!
Sunday, 13 May 2012
The evidence says ...
Forgot to update re: Wednesday's appointment! Too busy having coffee with friends....... ;-)
Saw the consultant after I had been flushed.. she confirmed that they would book me a PET scan about 2 weeks before my checkup, I said ,, 'oh good, we can see if it worked' ... she said, by looking at me and how I look, the evidence is pointing towards me being fine... I LIKED that positivity :)) Let's see what they all say in June! :)
It was brilliant to see two of my loveliest friends on Wednesday too. In July I am going to have a big birthday bash and have as many of my friends there that can make it :)) It should be a celebration of all sorts!!
Monday, 7 May 2012
Bank Holidays and Countdowns
Well, it's mostly raining so it MUST be a bank holiday ;)
Looking forward to a few things this week ... coffee at Lynne's Wed morning before I have tubes flushed (haha not for long!!) and then coffee and catch up with LM on Wednesday after we have both had our appointments... haven't seen each other since before we both went in for ops and transplants so we can have a more relaxed coffee and not pretend we're not scared haha :)) Thursday my favourite midwife is taking me to lunch!! How spoiled am I?
I was moaning about how long it will take to get check up etc and suddenly we're already 1 week into May which means it's only 6 weeks til I go to the Heath again?! I'll try to remember this week when I'm down the Windsor suite being flushed, to ask if I'll be having scans etc or if they can just tell from bloods, which seems unlikely to me but then who knows! Saying SHUSH to the What-If's because I can't be worrying about nonsense like that for the next 6/7 weeks!
My legs are now normal, apart from the mottled skin, but at least I don't look like some frantic skin-shedding freak any more ;-) I'm putting cream on my hands and face as they are stil a bit dry. My energy levels are still low but much better and I can pootle around more now. Looking forward to doing stuff in the summer now, when I'll be even more 'myself' ;)
I have a house full of my free range teens and their boyfriends today! Deri is lurking with Broni and hers coz they are watching Harry Potter and I am in my room with my feet up on the sofa :)) Megz wants to go clothes shopping and Ben doesn't and they don't know what else to do so they've ended up cleaning and clearing her room hahaha! If only it wasn't raining, I'd have them mowing the VERY overgrown lawn ;)
My mother had some tests and it seems it is not angina which is good, but her lungs aren't functioning properly so probably get more pills! Bryan's hip hurts lots so we need to get him to the GP coz he's beinga 'bloke' and won't go; Aunti Phyl (Bry's last living relative at 93 yrs old) is deteriorating and so they're going to check on her, in Devon, tomorrow..she won't go into hospital in case she doesn't come back out bless her. So sending all of them healing hugs and blesings too!
The donations for the Race for Life keep increasing! HUGE thank you's to everyone for being so generous... I am looking forward to it very much!!
I think a nap might be in order, although it'll be light coz Deri is lurking!
Wednesday, 2 May 2012
Hickman, you're on your way out!
Wednesdays seem to roll round quite quickly.
I took a while to wake up properly this morning, on a Go Slow mode... Deri asked if I was ok today because I was talking slowly... bless her! So on the ball. Makes me proud of her but sad that she has to have that little niggle to deal with. I told her I was just a bit slow this morning! She's excited too because her new friend from her new school is coming for tea! ;-)
Anyway, it was tubes flushed AND bloods and dressing change today, so off I trooped. Had a chat with Sandra about kids crashing their cars, chatted with a lady who can't find a good aromatherapist, I said I used to do that but for obvious reasons don't do it right now - she said could she call me in a few months and see if I was doing it again? Hmm, this could be interesting :)) Also bumped into a lady who was waiting to have her spleen out the same week I was due to go in for transplant - she was on a bed having chemo - she said it was her first session as when they took the spleen out they found out she had NHL - oh I said, "oh same as me... you'll do just fine. Well, I am sure she will, but felt sorry for her when thinking of possible bone marrow tests and maybe the SCT... I was wearing my scarf I got from the wig shop, she liked it and we chatted about wigs and cutting hair shorter and getting funky with hats and scarves... I never wore anything like that before, apart from a sunhat occasionally, so I have learned a new skill - tying scarves in comfortable and acceptable ways hahaha!
Good news, my bloods were all very good, and a referral has gone in to get the Hickman line out - whhoohooo!!! Can't wait for that :))))
Popped in to see Jo and ended up having lunch there which was fab, then had an email from a certain "TinTin" who says there are 2 trollbeads winging their way over from Luxembourg?! I am rather spoilt methinks!
I feel very positive and as though everything is working, but there's tests and scans and checkups to come and that's a bit of a drag as I want to say goodbye to it all now! But then that's a bit impatient and you have to be more cunning than that when dealing with stoopid cancer :D
Wednesday, 25 April 2012
Improvements
So what's happening this week? Well, the dry skin is still with me, but the intensive peeling on my legs is improving and I no longer leave a shower of skin on the floor when I get undressed etc!! As my skin peels the ''chemo tan'' is fading but I still have it on my face and chest. My nails grew really long, I lost my hair again (all over body too) but my eyebrows and eyelashes have STILL hung in there!
My energy levels are slowly improving and I can now cook a meal or wash up without feeling utterly exhausted... I do have to sit down afterwards but I don't feel wiped out anymore!
Went to have my tubes flushed today, and the doc came over for a chat too, and said they are thinking of getting me a date quite soon to have the Hickman line removed! I will be waiting impatiently for the 3 week healing period then so I can lie immersed in a bath up to my chin, after so long with a shallow bath haha!
And, the sponsorship target has had to be raised as we smashed it in 3 days!! :)))
Sunday, 22 April 2012
Beautiful people
Well, I have to confess to being somehwat bowled over by the lovely actions of some friends this week!! Funnily enough, LM and I had been muttering about trying to walk around one of the Race for Life routes this summer. With lots of pit stops ;-) Then, a couple of days ago, Claire asked if I'd mind if she set up a team page for people to run one of the routes in honour of me!!??!! I had a lot of dust in my eye after that...
Anyway, it happened! There's a facebook page to promote it and a Justgiving donations page to sponsor us all, and LM is coming along too and Claire put up a a target of £400 which got smashed in just 3 days so she's raised it to £600 now hahahaha!!!!!
Both LM and I commented earlier that it has made us realise what an enormous impact us having cancer has had upon our friends. I kinda knew that people were concerned and loving and supportive, but this whole team run thing has highlighted just how fucking amazing the people are that I know!!! I am overwhelmed, and thrilled, and stunned, and keep getting eye incontinence ;-)
It means more than I can express to know how loved I am, and to admit that I am loved actually! My step father said previously that he has been impressed by how brilliant my friends have been, and it's true. Not just running a race, which is fab, but the calls, the queries, the surprises, little gifts, the treats, hugs, holding my hand, little messages which can light up a gloomy day, just being there for me in a myriad of amazing and simple and very special ways. This includes my family, all of them, my daughters of course, my friends near and far, old and new, the hospital staff, and friends I met on Macmillan that I may never meet in the flesh but who have been just as supportive as my friend 1 mile away! Each and every one of them has helped me cope with bastard cancer in all sorts of ways. I don't know how I can ever truly express my gratitude.
I guess staying alive and truly kicking cancer's arse would be one way .... ?! ;-)
Anyway, it happened! There's a facebook page to promote it and a Justgiving donations page to sponsor us all, and LM is coming along too and Claire put up a a target of £400 which got smashed in just 3 days so she's raised it to £600 now hahahaha!!!!!
Both LM and I commented earlier that it has made us realise what an enormous impact us having cancer has had upon our friends. I kinda knew that people were concerned and loving and supportive, but this whole team run thing has highlighted just how fucking amazing the people are that I know!!! I am overwhelmed, and thrilled, and stunned, and keep getting eye incontinence ;-)
It means more than I can express to know how loved I am, and to admit that I am loved actually! My step father said previously that he has been impressed by how brilliant my friends have been, and it's true. Not just running a race, which is fab, but the calls, the queries, the surprises, little gifts, the treats, hugs, holding my hand, little messages which can light up a gloomy day, just being there for me in a myriad of amazing and simple and very special ways. This includes my family, all of them, my daughters of course, my friends near and far, old and new, the hospital staff, and friends I met on Macmillan that I may never meet in the flesh but who have been just as supportive as my friend 1 mile away! Each and every one of them has helped me cope with bastard cancer in all sorts of ways. I don't know how I can ever truly express my gratitude.
I guess staying alive and truly kicking cancer's arse would be one way .... ?! ;-)
Thursday, 19 April 2012
More good stuff
I am feeling a bit stronger again this week, trying to pace myself so I don't overdo it! My bloods were better again this Wednesday so don't need to go back for 2 weeks this time. Sandra the nurse said that once they can see my bloods stabilising in a few weeks, they can arrange to get me in and get the hickman line out - whoo hoo!!!!! And they were high enough to allow me to pop into local shops if I need something! I drove "a lot" (compared to what I am used to at the moment anyway) yesterday and my legs ached this morning, so I guess that's something to keep in mind!
It's very wet and cold this week - today I was in all day - Lynne came over with a big bun and we chatted over pints of coffee and lit the woodburner... been lovely!
Deri started her new school yesterday and has settled in straight away, and made new friends too! In the playground today I was waiting to pick her up and one of the mums started to chat to me - turns out her and her hubby have a furniture business running from one of the units on Glanusk, where they rent out workshops! And our daughters came out together chatting and played in the yard :)) The mum is called Rachel and she said we'd have to go round one day for coffee and a play :))
So next month mum and Bry are taking the kids on holiday - Megz and Ben aren't going - it'll just be me and them for a week, but no Broni or Deri for a week. Lots of lie-ins heehee!! Be very quiet round here!!!!!
It's very wet and cold this week - today I was in all day - Lynne came over with a big bun and we chatted over pints of coffee and lit the woodburner... been lovely!
Deri started her new school yesterday and has settled in straight away, and made new friends too! In the playground today I was waiting to pick her up and one of the mums started to chat to me - turns out her and her hubby have a furniture business running from one of the units on Glanusk, where they rent out workshops! And our daughters came out together chatting and played in the yard :)) The mum is called Rachel and she said we'd have to go round one day for coffee and a play :))
So next month mum and Bry are taking the kids on holiday - Megz and Ben aren't going - it'll just be me and them for a week, but no Broni or Deri for a week. Lots of lie-ins heehee!! Be very quiet round here!!!!!
Monday, 16 April 2012
Home Sweet Home
Went to Nevill Hall Wednesday and had my bloods done... sat talking to a fella who was in the same time as me having his 2nd transplant - his stem cells are bit sluggish. Eventually bloods came back and the registrar took me off to discuss - they are very pleased as my kidneys have recovered, which apparently they were worrying about after me being poorly whilst in there. My platelets are 126, which means as they are over 60 I am allowed to drive. And my neutraphils 0.6 so all going in the right direction. Time to start the echinacea and multivitamins and get my juicer working hard again :)))
After lunch we packed everything up and mum and Bry drove us home. Oh my goodness it was so good to walk through my own door after so long!!
My teenagers went into superdrive and have been looking after me amazingly well. Breakfasts in bed, and cooking all the evening meals...and Ben has been cooking and washing up too bless him :)
I am very proud of my little family :)))
On Saturday I got dressed properly and ventured into local village... I drove the whole 1 and half miles with Bronwen and sent her into the shops for me. It felt weird to be driving after so long, but it went well! I had a rather big surprise when I was waiting outside the shops - Megz called me to say I had visitors - someone I havent seen properly for nearly two years, a friend I did a traditional sweatlodge with a while ago. Petty things got in the way, but I think recently perspectives have changed, and well, anyway, it was very good to see him and his daughter again, and the shiny motorbike! ;)And just as they were leaving, Jo appeared with homemade lemon drizzle cake - nomnom!!!!
Sunday I drove to mums for Bry's 73rd birthday - wow what a lunch! Big fat prawns in lime sauce for starter, and chicken and mushroom creamy sauce with pasta for main, and massive trifle for pud - my portions are still smaller than usual, but I am starting to get some tastebuds back!
Today Deri and I are watching films and waiting for the plumber as the kitchen tap is leaking over the floor. And getting ready for her new school on Wednesday!
Glanusk are having some kinda Jubilee do for Her Maj, she's making an appearance so us tenants are getting our trees and bushes pruned and lopped so the route in looks neat which is making me laugh a lot!!
The good thing is that I find I am not getting overly cross about much - not taking the negativity on board is going to be one more lesson I'm learning; I already worked out there's no point. You can still support causes and stand up for injustices, be upset for your friends when they're hurt etc ;-)) And I suppose I'm instinctively saving my energy for what's important?
I'm looking forward to being strong enough to take the dog out.
I'm feeling very positive in general. Which is good.
After lunch we packed everything up and mum and Bry drove us home. Oh my goodness it was so good to walk through my own door after so long!!
My teenagers went into superdrive and have been looking after me amazingly well. Breakfasts in bed, and cooking all the evening meals...and Ben has been cooking and washing up too bless him :)
I am very proud of my little family :)))
On Saturday I got dressed properly and ventured into local village... I drove the whole 1 and half miles with Bronwen and sent her into the shops for me. It felt weird to be driving after so long, but it went well! I had a rather big surprise when I was waiting outside the shops - Megz called me to say I had visitors - someone I havent seen properly for nearly two years, a friend I did a traditional sweatlodge with a while ago. Petty things got in the way, but I think recently perspectives have changed, and well, anyway, it was very good to see him and his daughter again, and the shiny motorbike! ;)And just as they were leaving, Jo appeared with homemade lemon drizzle cake - nomnom!!!!
Sunday I drove to mums for Bry's 73rd birthday - wow what a lunch! Big fat prawns in lime sauce for starter, and chicken and mushroom creamy sauce with pasta for main, and massive trifle for pud - my portions are still smaller than usual, but I am starting to get some tastebuds back!
Today Deri and I are watching films and waiting for the plumber as the kitchen tap is leaking over the floor. And getting ready for her new school on Wednesday!
Glanusk are having some kinda Jubilee do for Her Maj, she's making an appearance so us tenants are getting our trees and bushes pruned and lopped so the route in looks neat which is making me laugh a lot!!
The good thing is that I find I am not getting overly cross about much - not taking the negativity on board is going to be one more lesson I'm learning; I already worked out there's no point. You can still support causes and stand up for injustices, be upset for your friends when they're hurt etc ;-)) And I suppose I'm instinctively saving my energy for what's important?
I'm looking forward to being strong enough to take the dog out.
I'm feeling very positive in general. Which is good.
Tuesday, 10 April 2012
Recuperation, and cwtchs
It was SO wonderful to be discharged last Thursday evening!!! Mum and a porter wheeled me and my suitcase down to where Bryan and Deri were waiting in the car - Deri and I hugged with watery eyes but then she had so much news to tell me we didn't have time to be emotional for long! As expected, Deri has been sleeping in my bed since I got home ;))
Big cwtchs from Broni when we got in, and Meg and Ben appeared on Friday for more hugs :)))
Mum and Bry being fabulous and spoiling me, but I am trying to potter about and get my strength back, but mostly I am sitting/lying down because thats all the energy I have to do! Amazing how utterly exhausted I am. Have to do things in slow motion and rest after any task!
Tomorrow (Wednesday) I have a check up and bloods done in Nevill Hall - be weird but good to see them again ;)) Then back here to pack and we're being delivered back to our house. I have to see what levels my platelets are before I am allowed to drive - but as Megz passed her test and has her little car, she can do me some favours too! :))
I have told her and Broni that I can't do major cooking etc etc so they're going to have to take it in turns to help me out!
Just glad to be out, to be doing well, and looking forward to feeling less feeble! :)
Big cwtchs from Broni when we got in, and Meg and Ben appeared on Friday for more hugs :)))
Mum and Bry being fabulous and spoiling me, but I am trying to potter about and get my strength back, but mostly I am sitting/lying down because thats all the energy I have to do! Amazing how utterly exhausted I am. Have to do things in slow motion and rest after any task!
Tomorrow (Wednesday) I have a check up and bloods done in Nevill Hall - be weird but good to see them again ;)) Then back here to pack and we're being delivered back to our house. I have to see what levels my platelets are before I am allowed to drive - but as Megz passed her test and has her little car, she can do me some favours too! :))
I have told her and Broni that I can't do major cooking etc etc so they're going to have to take it in turns to help me out!
Just glad to be out, to be doing well, and looking forward to feeling less feeble! :)
Thursday, 5 April 2012
Day 14 - counts are up!!!!!!!!!!!!!!!!!!!!!!!!
So, I can go home!!!!!
Either today if they get their stuff sorted in time, or in the morning!
SO excited! Thrilled in fact............ quite emotional :)))
Either today if they get their stuff sorted in time, or in the morning!
SO excited! Thrilled in fact............ quite emotional :)))
Wednesday, 4 April 2012
Day 13 - - 2 sleeps ??
Well my counts were hovering and being a bit sluggish so I talked to doctors and we all agreed having the booster (GSF) injection would help, especially as we're aiming to leave on Friday! I feel that I will, but I'm scared to say Yes for definite in case they need to do one last thing! Deri and I will explode if it's not Friday!!
The BMT nurse came round earlier to go through my discharge notes, which is also a good sign one hopes!
Finished all my books now, but not quite in mood to watch films despite having about 30 on that external drive from Ben!
EXCITING news is that Megan passed her driving test today! First time! Very exciting, also feels weird having a kid old enough to drive haha!!
I have lost 8 kilos, somewhere! My skin is as dry as anything, I have various lotions and potions to put on, some handmade by friends of mine, so keeping skin topped up, although the skin on my legs and breasts is peeling! No idea why those areas haha!
I'm SO ready to go home. I know I won't be able to do much, but it won't matter. And I'll have an appointment with local hospital, prob next week, for a check-up, which will be both odd and reassuring, because I have to say, there were times before transplant that I wondered if I would make it through!! Silly ? Probably, but it's big time stuff :)) Then a 3 month check up here too, so guessing I'll be popping to local hossie as and when necessary in between.
So, let's see what blood count says tomorrow!!
The BMT nurse came round earlier to go through my discharge notes, which is also a good sign one hopes!
Finished all my books now, but not quite in mood to watch films despite having about 30 on that external drive from Ben!
EXCITING news is that Megan passed her driving test today! First time! Very exciting, also feels weird having a kid old enough to drive haha!!
I have lost 8 kilos, somewhere! My skin is as dry as anything, I have various lotions and potions to put on, some handmade by friends of mine, so keeping skin topped up, although the skin on my legs and breasts is peeling! No idea why those areas haha!
I'm SO ready to go home. I know I won't be able to do much, but it won't matter. And I'll have an appointment with local hospital, prob next week, for a check-up, which will be both odd and reassuring, because I have to say, there were times before transplant that I wondered if I would make it through!! Silly ? Probably, but it's big time stuff :)) Then a 3 month check up here too, so guessing I'll be popping to local hossie as and when necessary in between.
So, let's see what blood count says tomorrow!!
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