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

Festival of Friends? ;)

Yes, yes, a treat this time, you get to see my face too! ;)
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.

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 ... ;)

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!

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!

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...??

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!

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!!

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!

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

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!! :)))

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 .... ?! ;-)

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!!!!!

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.

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! :)

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 :)))

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!!

Day 11 today

I can't believe I haven't written for so long! I guess that demonstrates just how weak and feeble I am/have been! I had the ''usual'' fever from having zero immunity, I had vomiting, I tried the NG tube 3 times but kept gagging on pills so in the end,, after bringing it up 3 times, we decided to leave it and give all meds & fluids/food via the drip etc. I have slept all day and all night (apart from being poked or prodded by the staff, who, I have to say, are amazing here !) and until yesterday was really in a hazy, partly drug induced stupor. I roused myself when my mum came to visit and when I was phoning the girls, and then collapsed again!
I had the joy of a syringe driver for 4 days too but that was also taken away this morning as I am no longer in pain with my throat - even sipping cool drinks hurt. I woke up today and for the first time felt a bit bored.......... a good omen methinks!
Saw the Top Guy, Smiley Consultant today; I am basically ready to go home as soon as my blood count comes up........ so let's focus on 0.5, asap!!
I am SSOOOOO looking forward to going home and hugging my babies!!!!!!!!!!!!

Day minus 2 today!!

Oh, hello there. Days minus 3 and 4 were mostly spent in a feverish haze... one of the chemo's can do that apparently, so I've alternately freezing or boiling, and mostly asleep!

So not much to report from those days I'm afraid :))

Today is my last day of chemo - huzzah!! I am being hooked up at 11.30, and will have to pee every 10 minutes until 4pm - the chemo takes half hour but the fluids will take til 4am, they are there to flush it through and out, so it's DEFINITELY pissflapping day today haha!

Tomorrow will be a day 'off', then I get my stem cells back on Thursday - yay! So far my mouth has been behaving, I have 2 mouthwashes to swill with several times a day, but it's likely to play up in a couple of days time, although I'm hoping I'll be a level 1 not a level 5 in soreness!

I have a nice rash too from the drugs, all over my chest and thighs, and the runny poo's have begun.

Anyone desperate for a SCT now then,..have I sold it well? ;) HAHAHAHA!

Belated day - 5 ...

Greetings. Couldn't quite muster the strength to get online last night so here's the gist of what happened yesterday -

Woke up not feeling refreshed! I think having so many fluids and having to pee every hour doesn't help one's sleep patterns! ;)

Slept all day apart from being woken for obs, food etc, but didn't want any food... forced the soup down at lunch time. Tried plain jacket spud at dinner time. Had been cold all afternoon, 'uh-oh' I thought, 'here comes something'!

Managed to call Pam (wonderfully looking after my girls this weekend) and Deri briefly about 6pm, I do miss my girlies!!

So yes, threw up at 7pm, and then slept all night from there! Have a vague memory of them doing my obs more often so assumed I had a temperature too.

So it is like a roller coaster really! ;)

Woke up and grabbed the card n pressie that Meg told me to being in with me for Mothers Day today - lovely card and funky bedsocks (already had my trollbead last week) - the card reminded me of why I am here - to kick this pissflapping bastard cancer back where it belongs - ie: far away from me, or any of us hahaha!

day minus 6

WHY do they insist on bringing you fresh water at 6am, closely followed by doing your obs???? 6AM!!!

Then a call at 9.30 am from my mum...Deri missed her school trip today, as she threw up last night... :( I spoke to her, and just wanted to cwtch her up with a blankey, but can't ... BALLS!!!!!!!!

Anyway... lots more fluids, 2 hours of chemo, more fluids. Dunno what was in the chemo but when it began I had a funny taste in the back of my throat, kinda metallic... only lasted a few moments though.

I am weeing and pooing for Wales today!!! I lost count how many times my reading/napping was interrupted by visits to the loo! Feel a bit nauseous this evening but nothing too bad.

My skin feels very smooth in places, in others it is very dry. Maybe it's trying to be a type of wine ......

And very very sexily, they have put on my legs, a pair of DVT socks!!!! Mmmmmmmm, bald, nauseous white DVT stockinged lady, lovely hahahahaa!!

As I came back from the loo a nurse asked if she could just shut me in my room for a mo while they did something.....mysterious...... I glimpsed a bed being wheeled down the corridor - I think it's one of the post-transplant folk being moved about - once I get my cells my door will be closed at all times - apart from nurses coming in - too. They are, excuse the phrase, shit hot on their germ control stuff!! And this is good.

Apparently I am quite unique in that most folk on this ward have donor transplants. Well dear, didn't want to be too common.. hahahaha!

Had a visit from aunty Chrissy (mums sister), with a book and a card. Had a pressie delivered from some crazy cat lover too - naughty, but much appreciated!

And another lovely chat with my girls :)))

Hugs and Love to you all, coz your TREMENDOUS support is helping ENORMOUSLY.

Xxxxxxxxxxxxxx

Transplant begins!!

Apparently it is now Thursday. I'll come back to that.

Had a nice weekend with the kiddies, and with my friends.
Friday evening Deri stayed with granny and I went to Jo's with a few other mums from the area for a rather nice gathering, lots of wine and scrummy nibbles! The mums from Deri's school clubbed together snd bought me a trollbead! Wow that was lovely. Jo then presented me with one I was saving for - a silver one called 3 siblings ... very sweet, nearly cried! Saturday, Deri started riding lessons. She has had sporadic sessions of horse riding, and been nagging me for them to be regular, and her friends aunt owns a stables, and I am friends with that aunts sister,,,, so we are paying but going in on her friends lesson which ususally is just them and their cousin :) Deri LOVES horses and will be a happy womble every fortnight now haha! Then we came home, ate chocolate and watched movies. Her big sisters babysat that night as I was invited to my friends for another Pre Admission Knees-Up, where we drank far too much vodka (or just the right amount, depending on one's viewpoint!) and pink bubbly haha! On both evenings I had SUCH a good laugh, and just soaked up all the love and support ready to take into hospital with me... just as I have soaked up the love and support I have from everyone, at home, on Macland, everywhere! On Sunday, I sat down with Deri and her calendar, explained how the doctor wanted me back in hospital, it would be for longer but then I wouldn't need to come in again (thats my plan anyway!) and we marked off the days and gave her a packet of stickers to stick on one night at a time. She said ''only 2 more days with you before you are away for a LONG time" ... big gulp, no tears, smile bravely and convince her it's all good! Which, it will be...

So, Monday is spent packing. And told to call at 9am Tuesday... which I did, and was told to come in for 3pm. Then called at 1 pm and said no bed free til 8pm, but I couldn't get a lift at 7pm (coz of kids) so I arrived at 3.30 and sat in the relatives room until 8.30pm, watching tv and reading and had my patient's dinner served in there too!! This seems to be a trend with me and my admissions haha!

Put on a 4 bed ward - 1 woman has HL and has a 12 day old baby born at 31 weeks via C-section in neonatal and she's in coz of temperature after chemo!! The other 2 women have leukemia. Next morning, HL lady can go home. I am given bloods etc but no treatment. Then last night about 11pm, an elderly lady was wheeled in. Quickly established she also has advanced dementia. They inserted a catheter and she dozed off.So did we. Then at 2.30am I was woken by her at the foot of my bed, the catheter trailing behind her. "Hello? Can you help me get this thing out, I don't know what it is?"
WHOA! 'Oh no', says I, 'we can't take it out, wait there and I'll get a nurse'...
Well this happened at various intervals during the night so not much sleep had by anyone, poor old dab, she's a real sweetie.

So then it's today and there are bloods being taken and charts drawn up and protocols to read and chemo days to absorb........and then taken to the transplant ward across the corridor and through big double doors into my single room. It has an ok view, it has a flat screen tv and remote, it has my laptop and DVDs and books etc.... and I can keep the door open as much as I want until stem cells go in and then it's door closed at all times. The food is better than at Nevill Hall so far, huzzah!

Today is day minus 7... 3 hours of fluids, 2 hours of chemo, now on 11 hours of potassium/saline. days -6 through to -3 I have a different chemo, then day -2 another one again, then -1 is a rest day with no chemo, and then day Zero is stem cell day.

I have managed to Skype my kiddies each evening :D Yay!

So, here we go, da da ddaaaaaaaaa.......................

7 sleeps

Well, here we are. 7 sleeps before SCT.
As long as they have a bed for me when I call them at 9 am on the 13th ;)

Half of me wants it over with, to crack on, the other half wants it to not happen haha!!

I am a whirlwind of emotions and different headspaces right now. One minute calm, collected, accepting that this SCT WILL make me better and to bring it on. The next minute i am panicking about my kids and all the What-If's surge through my brain and then I have to pinch myself and remind myself that 8 months ago I had a bombshell told to me but nothing has stopped me getting better slowly and this will jolly well continue!

I noticed that my diary entries were getting a little more sombre than at the beginning, not always doom and gloom, just maybe more reflective sometimes? And then I see new arrivals on the Macmillan website and read their first few entries and comments and I recognise myself! I was that slightly naive person, bravely laughing at all the shitty stuff being told to me! Yes, I AM still laughing at cancer and kicking its arse still, but with the experiences that I have encountered, I think the humour becomes more gallows and the dark days rattle more loudly in your head when they make their unwelcome appearance!

I notice that sometimes I feel very protective and worried about my children and friends and family, and sometimes I feel resentful, or irritated etc.

And although I do not want my kids to know how crap I feel and how difficult it is being SO tired all the time, some days, if they are playing up or being stressy, I feel like telling them to shut up because I need no stress to feel better and how dare they they stress over pathetic issues etc... but of course I can't say that because to them they are important issues and it's not my place to give them guilt! ;)

And although I do not want to be fussed over and asked how i am every 5 minutes, if someone DOESN'T ask me or I don't hear from a friend for a while, I feel quite put out! But I do not wanted to be treated differently, that is what I said at the beginning of all this. Yet that is not QUITE true I now realise. Well, nearly not true... see how tricky this gets ?! haha! ;)
I want to be treated the same, but with a bit of extra attention, but only when I am in the mood for that. Fucking hell, it's quite a balancing act for both me and those around me I am sure!!

It's natural I guess... all this being on swings and roundabouts and a roller coaster too.
Do I sound selfish? Or weird? Or like a normal person coping with a shitty disease that fucks with all our heads?!

My relationships with everyone have shifed too. Not massively, just subtle little changes, and whether they have been made by me, or them, or us both, I don't know. Not conscious changes either. And perhaps, it's just me and my head noticing things differently? My perceptions have obviously altered and so I suppose that influences how I interect or how I think we're interacting??

Maybe I need to stop thinking so much :D

'Stuff' - good, bad and the ugly - and the fun ;-)

Made my call to the Heath Monday morning: explained my circumstances - was told that there was another lady with the same disease status as me (now there's another new bit of terminology... disease *status* - hey, what's your status..? haha) who had been pencilled in for the 13th March, and if she hadn't been told that already, they could swap us over... so waited for a call the next day.

So Tuesday I went for my reflexology...always bliss. The manager, Diane, stopped me for a natter afterwards; she likes to see how we're doing and make sure they're doing what they can etc. As we sat chatting, Diana told me about Carer's day, which is once a month. She said my mother could come in that Friday for a free treatment - I said yes, call her, she'd love it and she deserves it! Then I told her I was hoping for a call and hoping it would be the 13th - and then my phone rang and I had the news I wanted!! Yes! :)) They said my ''release date'' (haha, am I in prison heehee) would be the 6th April - fab... that means I can be home in time for Easter and for Deri starting new school :)))

On Wednesday, as mum and I were walking towards the cinema from car park, I had a call from the Heath....
This rant may prevent me from punching my dentist in the face, or the balls.
Ok, as we know, I am due to go in for a stem cell transplant soon. Prior to going in, they send you for tests and scans and x rays and to the dentist - to check you have no areas of weakness or infection etc anywhere in your body (lungs/teeth/kidneys etc etc) which would be trigger during transplant - this would result in an extra nasty infection due to zero immune system and therefore heavy duty antibiotics and possible a proglonged stay in hospital (already in for 3 weeks).
Ok, so passed all my tests, then went to see dentist - (should add here that I am seriously PHOBIC about the dentist. Without a doubt, I very much am! I asked for sedation last time I went, he refused, kinda mocked me, so I didn't go again until now!) - I explained it to him. He said that I needed some work done but the healing would take weeks and delay the transplant, BUT that the work needed was not urgent and would cause no DIFFUCLTIES OR INFECTIONS DURING TRANSPLANT. He had to write a letter to this effect to my consultant. He said 3 treatments, a week between each one, and 4 weeks to heal the root extraction.

I took the letter with me when I saw her this week.. I opened up the envelope and saw immediately that he addressed letter to the name of the hospital. Erm... Then he started letter with a reference to me missing one of his appointments. Um... but went on to say I could have treatment done at a later date.
Anyway, the Heath hossie called to say his letter was a bit dubious so they called him - he told them something rather important that he omitted from his letter - I actually have an abcess on one root, not active as such but its there, waiting. And that he can do all 3 things on one day (Thursday) and with strong antibitocs, I'll be healed in 7-10 days.

WTF??

So I could have gone in on 13th, had the SCT, and then had a massive infection and abcess, delaying my recovery and causing potentially dangerous complications?

Oh, that's alright then!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
AND........ what's with the sudden change in healing time? Been caught trying to blag more fees eh? Fucking stupid idiot, how dare he play around with my health like that????????????????????
Right. Better getting all that out! Perhaps a letter regarding negligent attitude may be therapeutic too haha!!!!!

By the way, we went to watch The Best Exotic Marigold Hotel - AMAZING!!! Just beautiful :))) Such a nice treat too, just me and mum, doing something relaxing :)

As I am phobic , I was nervous and stressed already. They wanted me to go to him today and get this work done?? I called Windsor suite first thing this morning and spoke to the fab Sandra, who spoke to the orthandontist to see if THEY could fit me in instead. As he had offered me an appointment, they couldn't treat me :( I told them I will need sedation, and Sandra got a prescription ready to pick up prior to appointment with Mr Thicko Dentist.

First, it was Cwmdu school's mini Eisteddfod, so went along with mum and Bryan, bought tea, cake and raffle tickets and watched Deri and her gang sing and play instruments and also be waitresses/waiters for our tables :))) Fab!! Always a little tear in the eye :))

Then, off I went, picked up sedative and off to stooopid dentist, feeling a bit sleepy - that may have prevented me kicking him in the balls! ;))
Some weird contraptions were shoved in my mouth and two back molars were tugged out. A re-filling done too, and then home, where I fell into a drug induced coma for a few hours, thanks to a lift home from mum and Bryan, who also left a meal for the kids and soup for me :))) I will be looking after the wounds very well to help them heal in time for the 13th!

Tomorrow is a day or much leisure - coffee with Jo early morning, then meeting Lou, then meeting LM, then of fout to the Manor hotel in the evening! I need some spoiling after today!!

Swings and roundabouts

Monday = spent in bed, not asleep but propped up on pillows with tv and laptop. Tuesday = met with Lovely Liz, the biodynamic counsellor whom I found to work with our clients at the MAC. She had been 'home' to Barbados for 6 weeks, so we had a LOT of catching up to do, and drank tea and chatted and as usual had a good giggle.
Wednesday = well,I had been waiting with baited breath for this day, as I was going into get my tubes flushed, but also, we though the Heath would have come up with a date for the SCT as they had their meeting the week before.

But No! No date.

Felt somewhat deflated! I want to get this bloody procedure over and one with, it's hanging over me like some dark cloud and now they can't decide when?? My consultant was a bit miffed as we had got the R stuff done quickly to be finished in time for the damn thing! Sandra called them ... they were in a meeting. Fucks sake! I need to know, because funnily enough, I am a single parent who has to get THREE weeks of childcare sorted for my 3 kids, and it may not be as simple as I thought before because my friend who was going to be here on weekends has had a bit of a crisis as her eldest has had a bit of a breakdown, and so it's quite possible that she will, of ocurse, need to be spending time with her, which I suggested to her as she hadn't mentioned it... then later that day, a message - the Heath thinks maybe the 27th of March, or possibly the 20th if some fella doesn't go in.
27th?? They said last time it could be the 3rd or 9th.
Ok, maybe they have had an emergency or someone has not responded well and is staying in longer etc. But Deri changes school on 16th April as hers is being closed down, and I REALLY want to be here when she moves schools, because I know she will be having some anxiety for a while, especially if I am in hospital - look how she was when I was just in for a week.

Fuskc sake.
I am going to call them tomorrow, and see if I can get some sense, and a definite date, because the nurse said that they often just give you a day or two notice. Well, in my situation, that's just too damn tricky.
My friend Eils said maybe I need to go in whenever, and that I need to think about myself, and Deri will cope whatever happens. This makes sense in a way, but it's also MY anxiety that's troubling me!!!

So, despite seeing friends the rest of the week, and trying to focus on my new hobby of needle felting (I'm gonna make stuff to sell at the fessie, but I'm too grumpy to explain just yet!), I have had this extra uncertainty lurking over me (which explains my absence recently) kind of putting a dampner on things.

Today I went to visit Ann (L's daughter) who is very poorly now, and in hospital. She has tumours in lungs, neck, groin, and can't eat or drink properly. She was imagining all sorts of weird stuff about chemo etc, so I explained that no, it is not a big machine that you go in to be zapped with stuff, it is a drip or a tablet or an injection... and she was much relieved!! More results on Tuesday, by which time they may have worked out which is the primary tumour. Bastard cancer.

This week is a busy one: tomorrow I am calling the Heath, then taking Deri to see her new school, then I have a meeting with my line manager and head of HR. *Gulp*. I hope they don't say anything along the lines of 'too long off is disruptive to company so ta-ta'. Then a PTA meeting in the evening, joy! ;)
Tuesday, reflexology - boy do I need that this week!
Wednesday - tube flushing in morning, then I am taking my mother to see 'The Best Exotic Marigold Hotel' at the cinema :)
Thursday or Friday, Lou will be down from Cardiff :)

Life is indeed a strange bowl of fruit.

Nights off. Nights in.

Well, R day went well, feels weird not to be having any more, though of course I won't complain ;) Another little milestone. Of course it would be wonderful if it was the last treatment EVER, but just the small matter of the transplant to do now. Should know dates next week.
Went to dentist for check up prior to SCT. Now, for me, this is a HUGE event as I am PHOBIC and not been for years! I need aa filling replaced and two roots out, but there is no active decay so I can wait until after the SCT otherwise recovery would be 3 weeks anc delay the SCT - if there was active decay then the SCT would have to wait but thankfully not!!

That night, Broni ended up bein gout at a sleepover too, so there were no kids in the house. I lit the fire, poured the wine, watched films, ate delicious pasta, and lounged on sofa........... oure, uninterrupted bliss!

Thursday, met the delightful LM for coffee and we had a long and fab chat which involved much laughter too :)) We also discussed how next time we saw each other properly, we would both be on road to recovery, as LM has an op and I have the SCT in the same month!
It was a most wonderful morning :))

Today has been a lazy day with Deri - although she was more active than me actually as she was out in garden on the swings, trampoline, toy horse etc! Ralh had lit a fire in their garden, so she made up an adventure about being called Lucy and rescuing the horse from the smoke of the fire :) She is always usin gher imagination, and most days is either being a pony, or a puppy, or a bear, etc ;)
Tomorrow we are meeting friends in the park and then back to theirs for lunch. I expect it will be a simple yet very nice lunch as J's hubby is a famous chef with a very nice restaurant haha!

All these nirmal activities feel surreal in one way, as in a week or two I will be sealed up in a room going through the SCT! Oh DO hurry up summer!!!!!!!!!!!!!!!!!!!!!!!!!

Birthdays. Cakes. And the Waiting Game.

Shall we begin with the crap news and follow with the good stuff? This afternoon began with a frenzied tidy up for visitors! L(N's mum) and S came over and we talked a bit more about A... Linda's 2nd daughter, about my age, suspected lung cancer, more tests being done now. She is a recovering alcoholic and former heroin user and has cirrhosis of the liver so they are worried about how strong she may or may not be. More worried waiting. Bloody cancer. L went through breast cancer herself some years ago. N has sent more texts demanding more stuff but this time I have not responded, as I had asked him already to wait until my treatment was over. When L & S got home he was there and S text me saying L has told N he must leave us alone now til treatment is done. Let's see. He also knows about his sister now as he hasn't seen his family for months; this could mean he focuses on that, or could mean he gets emotional, drinks more, and harasses us more!

A friend emailed me today, as the fact that I will need childhood vaccinations again after the SCT, has really hit home.
Ah yes, childhood vaccinations etc ...as I said before, I am being wiped clear, nuked with mega chemo that will make me weak and poorly for a while. My kids will have to try and carry on as normal whilst I sit in an airlock type room for 3 weeks. Looks as though I will be in there for Mother's Day. And that makes me want to cry. Because they will hurt. I will miss them, and Deri will be upset. I can bear anything against myself. But what hurts/harms them cuts me deep. Against years of living with and surviving domestic abuse, protecting them as far as possible from it and its effects, nurturing them back to feeling secure and more confident, rediscovering my confidence and finding new and worthwhile employment to support them whilst I chip away at doing creative stuff on the side, dealing with mad/bad/indifferent family members, we now have to battle with all this shite! Bastard cancer. But we will beat it and then we can relax again, and laugh more often, and have less moments thinking ''what if'' than we do now...

What's exciting is that, on Saturday, Meg passed her theory driving test with flying colours!!! Yay! So now, countdown to the driving test... eeek!! :)) My baby, my firstborn, driving around in her own car?!?! heehee!! Also on Sat, K was down and stauing with E&G, so we all met at the Bridge with sprogs and dogs and then piled back to theirs with cake!

Deri and I have been spending quality time together playing on the Wii with the Harry Potter game!! Casting spells and zapping the baddies, it's good fun and has some puzzles and twists to work out too which Deri loves. And as wandering about makes me more tired, it's a good way to sit down and entertain her at the same time!

Monday was Mum's birthday; we made an apple cake (get me and my baking!) and went over for afternoon tea and Chrissie and John and Theresa were there too; Meg and Ben met us there and we all had a fab afternoon :))

Today saw Deri and I over at Jo's for the morning, always fab to see the lovely Jo, and O and Deri played brilliantly and Jo and I had a good ol' catch up.

Tomorrow is a Rituximab day, which is fine, I get to read and eat and drink coffee in peace, plus natter with a few other patients; the stem cell team are meeting tomorrow too, so may have some News About Dates soon. Then lunch at mum's and Deri is staying overnight - whatever will I do with myself?! Then Thursday, coffee with fave Viking in the morning before going to pick up Deri :))

I have also had some rather touching and very lovely comments from friends who have either read bits of my diary or just from stuff I have emailed etc. So my ramblings are therapeutic for me and have helped others, so I am both surprised and chuffed!

New consultants and passing tests

Saw GP Monday, to both ask for painkillers for Megz, and to have my ''fitnote'' extended. Also the fibromyalgia consultant's notes had arrived, so I had my repeat prescription, plus another one for a pill to stp my tummy reacting to frequent ibuprofen, and another; so far with my fibrowhassit, I have not wanted to take the pill they offer for better sleep (not falling into a deep enough sleep is something that effects fibro-folk) - but with my sleep patterns all over the place lately, I agreed to give it a go. And they're only 10mg but I have been out like a light the last two nights. This evening I didn't take it until very late hence me typing at 1.30am!! - this is also because of the overload of information yesterday at the Heath!!!!!

Heath: met Keith from Trinidad briefly - brilliant bloke! Then his fellow doc, also called Emma, from Ireland, and we had A Long Talk. Apparently it was called our 'counselling' session, but really it was her giving me a barrage of sometimes reassuring and sometimes scary information.
I can't recall all of it, but..
3 weeks inside is most likely. A feeding tube inserted down through nose in case I am one of those whose mouth and throat gets too sore to eat...some people manage a few things, others don't. Most will also get the runs - the runs and the sore mouth due to Mucositis - oh joy. 2 visitors are allowed in but they recommend not having more than 8 during whole stay due to feeling crap; under 12's not allowed as I mentioned before (is it a bad habit to repeat things to yourself??).

If you can't manage the hospital food you have access to an ASK menu when possible, and ice lollies to suck on , plus there's snacks available all day if you can manage to eat but don't want an actual meal, and you can have supplement drinks if can't manage anything solid.

I was given a huge pack to read through, spent about an hour and a half in the doc's office, then an hour waiting for bloods (where I met 2 post-transplant people, one was bone marrow), then they took about 12 tubes of blood from me in one go!

The aim is not to be in remission, but to cure. Yay!! 4 out of 5 people are cured. So, a few weeks of feeling shite, then seeing if it works, which I am intending it to ;-)
I veer between wanting to sob at the thought of all that hard work, and wanting it to be sorted now! This is Big Time Stuff, and I know I'm made of Strong Stuff; just all a lot to take in, plus form to fill in and boxes to tick and sitting blinking at doc one minute then thinking of questions the next... Also, after a few months post-transplant, I will need to have all my childhood immunisations again!!

Today was bloods, then an echogramm/echograph (??) and ECG and lung function tests - all clear, passed with flying colours , then back down to WIndsor suite for the Rituximab, and Jo very kindly dropped me off and picked me up :)) Also been trying to fill the 24 hour urine sample bottle! Just gotta book the dentist next.
Hah, ''just'' ...... I HATE the dentist. But, it's gotta be done!!

Tomorrow, hand bottle in, have a CT scan, and hopefully Em will not be called into work and we will have our dastardly plan of... cake and coffee haha!
We can have cake, because to day I baked two so that I could layer them with lashings of raspberry jam. YUMMY!

And now for sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep

Slings and arrows, or swings and roundabouts?

This week: Monday, GP, local. Tues, consultant at the Heath. Wed, lung function test and rituximab/antibodies treatment, and start a certain bodily function 24 hr sample, all in local hospital. Thurs, hand in sample, have bloods, go for CT scan, same hospital. Fri, nothing?! phew lol! ;)
And the government thinks cancer patients should work whilst having treatment?! 1) they are often too ill/tired, 2) they don't have friggin time!

Ok, so here I am, one minute feeling very gung-ho about going in for the stem cell treatment and feeling very positive and that it'll all be over soon and back to normal.
Then, I start thinking about statistics and whether I should bother having the SCT at all! I have no idea what my stats are or the long term prognosis after SCT, and part of me does not wish to know, and part of me wants to know it all!!

I don't think it's the chemo itself, just possible side effects. Of course, I am worrying about ''the unknown'' more than anything else! This is what I have heard so far, and of course this is from other people. I have so far, surprised people with how well I have tolerated chemo :))

The SCT (stem cell transplant) - I have spoken to some people at my hossie who have been through it, and read two people's accounts. Basically, I am going to feel crap. I may not have energy to read or eat. Some people have managed for a while, others couldn't. My immune system is going to crash through the floor and if I am allowed visitors they will have to wear masks gowns and those slipper thingys, and nobody under 12 can come in apparently. The chemo is mega strong, 5/6 days of it, then 1 day of nothing, then D-day, stem cells back in. But if you tolerate the chemo, its usually the stuff they store the stem cells in that makes you ill, and some people get the runs and/or puke for few days. Some a little, some a lot. Then you have blood, platelets, etc, put in via IV too, if needed. Your blood count has to reach a certain level before they discharge you.1 poor man keep getting infections and pneumonia and was in and out for months. Another was out in 18 days with no complications. Sucking ice lollies during treatment keeps your mouth from developing sores apparently. And there's a particular mouthwash that everyone recommends so that if you want to eat, you can, coz your mouth won't be affected.

So it's no walk in the park. A few say that it was crap but not as awful as they expected. As I have, so far, been ok and not poorly and responded well to everything, I fully intend to do the same this time too!!! :))) Expect the best, be prepared for anything else, methinks.

Its the being away from the kids that's already doing my head in, and worrying about Deri. If I was able to have it done in my local hospital instead of 40 miles away, I would feel better.And YES I know that I am doing this for them as well as for me, coz they need a well mummy. But that doesn't stop me worrying, because it's 2-3 weeks away from home and my kids, so there! ;)

Pam helped reassure me by offering to be here EVERY weekend for 3 nights Fri-Sun, even if Deri stays with friends every Sat night, that means everyone gets a rest and as she loves dogs and ducks etc then all that will be fine - how utterly fabulous of her! :)) The Viking lady has also made a superb offer to loan me her old netbook which has a webcam, as then I can 'see' and speak to my kids who will be on my old laptop at home :)) And Lou has offered to be my assistant in Cardiff, bringing anything I need to the Heath as she lives round the corner :))

I think I shall continue to lean one way then the other until it's all done and dusted!!

Perspectives. Oh, and cakes. And teens in cars!

So Wednesday rolled round, and off I went for a change of dressing, bloods, and Rituximab session.
That young guy was there - he's been in a few times now it seems, and is more relaxed, and has his sense of humour back - goody I thought, you've got yourself on track. It helps once you can do that, however long it takes, days, weeks, or months, we're all different after all.

So, consultant calls me in for a chat, I tell her I have been having cold feet about the transplant; she says that's perfectly normal. I am sure it is, and I DO like her a lot, but you know when you get that temptation to say to an 'expert' - "BUT ITS NOT YOU THAT HAS TO DO IT, IS IT?!?!"
Ahem. :))

So she tells me then that she has spoken to the team at the Heath, and it is a possibility that IT could be the end of this month! That's great, because it doesn't clash with school holidays (ie nobody has to look after Deri during the day and the night) and I should be out in time for the school to close (yes, the council deem it necessary to shut Deri's school :(( ) at Easter as us parents and staff don't want a slow trickle to nothing as kids need to leave etc - so there's a big party on the 30th March when they break up for Easter.
Now, I may only just be back out of hospital by then, but it's a good thing to aim for and if I'm too knackered to go along I shall be rather disappointed!

Yesterday (Thursday) I must have been visited by the Baking Muse and my body taken over by Nigella, as I spent the afternoon baking cakes!! This is a rare occurrence I have to point out, for those of you wondering why I am highlighting it! I set about looking for recipes for cakes suitable for Broni and her vegan diet - and dug out my old faithful, The Complete Vegetarian Cookbook - vegan chocolate cake and vegetarian carrot and poppyseed cake - the latter I have baked before but this time used all soya stuff instead of diary.
Yummy!
Oh, and Pedro tried waving and saying 'Hi' to me... pfft.

Ooooooooooooh - and Clod sent me a little Nepalese purse with crystals in!!!! I am very very spoilt! And they have very 'appropriate' properties too :))
- blue lace agate, jasper, bloodstone, citrine and amethyst.

Today has been a bit of a mix! Began with coffee round at Jo's; last time I went Jackie was there too and as hadn't seen her for about a year and Jo had just told her about me before I arrived, she was in shock and had to go early.. this time she had got her head around it all and was her usual silly self! Bless her she didn't now what to say last time, but this time was fine, no head tilts either, she did Very Well haha! Had a good old catch up with everone and a good laugh too :))
Home to do emails and make leek and potato soup with lentils and garlic - oh yes, this is so much more fun than working every day! Could I not just go to work 4 days a week and have one for baking and drinking coffee?? Please???

Then, this evening, as I sat with Deri playing on the Wii, Megan calls me - casually announced she and Ben were at hospital due to an icy corner spinning Bens car out of control at only 40 mph in the bendy lanes and them landing upside down!!!!!!!! !!!!!!!! !!!!!!!! BUT they are ok, just bruised and shocked. BLOODY HELL!!!!!!!!!!!!!!!!!!!!!!!!!! And, breeeeeeeeeeeatheeeeeeeeee.........................................
And here she is, taking her driving theory test on the 11th!!
Well, the goddess and the gang were looking after them both tonight eh?? A couple stopped and the mother put Meg in their car with their kids to keep warm and rub her back whilst the fella talked to Ben and waited for ambulance, fire engine and police. She said she waited to call me until she got to hospital as she didn't want to call me whilst upside down coz she was screaming... I said do NOT worry about worrying me and call me whichever way round you are!!!!!!!!

And following yet another forwarded chain email with racism from my stepdad, instead of deleting it I sent a lengthy reply - it was of photos of a Muslim demo with banners and posters. Apparently all of them said things along the lines of ''death to freedom'' ''wait til the real holocaust europe'' and ''butcher all those against muslims''. Thing is, all of them had exactly the same handwriting. Now, either 1 very dedicated person stayed up for nights on end writing them all, or... the photos are photoshopped!! So, I sent back a rant.
'Isn't it odd that all the posters and banners have exactly the same writing style, as though they have been photoshopped? Or maybe one person spent many nights preparing all those posters for the entire crowd?

There ARE extremists out there yes, but you can't tar a whole nation/ religious group / culture with the same brush, nor believe everything you read/see without researching it first.
Otherwise, all white people in Christian countries would be tarred with the same brush as a few extremists who go out and threaten to kill, and in a few rare cases, DO kill, doctors who perform abortions, for example. Or those who target funerals of gay people and hold up banners saying god gave them AIDS etc on purpose (even if they didn't die of AIDS) as they are unnatural.

Extremists are around the world, and they are scary. But they do not represent their whole nation/ culture/ religious group.

This sort of thing perpetuates extreme racism, breeds fear, and allows governments to get away with taking away our freedoms bit by bit.

The media can be a wonderful thing. By all means, we can read the papers, watch X factor, listen to the news, exchange emails and views ... but we also need to hold back from believing it is all true, and to fish around for evidence, to do some research, and to realise the media manipulates us all the time, whether it's the BBC, CNN, Fox news, local news, or just individuals sending out emails that contains their opinions but not necessarily the truth.

I am not saying the demo did not take place, or that some people there did not express scary opinions. I am saying, be careful, look deeper, be aware. There's a few discrepancies, and some pictures can be taken out of context, as usually happens with ANY demo, whether its students, hippies, religious groups, teachers, miners, etc...'

Harumph!! Ok, he's 72, maybe he can get away with saying it's a generation thing, but I don't think it's right. But then, he's an ex Lieutenant Commander of the Navy, and I'm a hippy who worked for Greenpeace and attended road protests. I guess we'll always debate such matters hahahaha!!

Anyway, my daughter and her boyfriend are alive, so that's all that really matters today!!

Travels and Trollbeads Versus Scans and Stoopid people

Had an impromptu lunch date with the lovely Kerry last week, which was lovely coz she's very cwtchy and can always make me laugh too :)
Pam was over Fri for dinner - we are willing Glanusk to get her that little cottage!! She is another rather fab person and to be closer would be rather nice plus useful for us both too as our 14 year olds are friends :)) I talked about this blog and how it could be a different thing (secret so far haha) and Pam read an entr and it made her sad coz I'd been sad and then she was worried about me and I said, it's just how it is.

So, Saturday found me in Alex's car being swept off to Buckinghamshire for Vicky's birthday bash which is also an annual gathering for us girls who lived in London together all those years ago ;) I sent a little 'hello' across the border to Oxfordshire to Hils as we zoomed along (and Alex CAN zoom!!)
Had a great evening and caught up on the gossip and news, and then my friends made me a bit emotional as they gave ME gifts - saying the felt like crap friends because they lived so far away!! I had lilies and stuff from Lush, and a trollbead! (thank you Michele!!!) Fab food and lots of bubbly and a good ol' laugh, and staggered off to our beds at about 3am which was a bit early for us, so we must we getting old ;)
I took some duck eggs so breakfast was duck eggs, smoked salmon and bagels and lashings of tea!!
Rescued my mum from Deri and the dog and then headed back home - picked up Broni who hd bleached and dyed her hair the brightest red!! Just like mine when I was on my 20's ;) Of course school wouldn't like it...
Monday, 9a, in car en route to Heath hossie for PET scan. Phone call. Broni in isolation for hair thats too bright. WTF? Could I please do something about it? Yeh I said, maybe if I have time after my scan I'll buy some dye. So, I did, still red though, but darker, not flourescent ;)
Waited an hour and a half for radioactive injection to do its stuff. When the nurses come in to administer it, they leave the syringe in its metal tin on a trolley outside whilst they get a cannula in your arm. Then 1 nurse swings the trolley in, they plunge it in and then get the syringe back in its tin pronto then dash out of the room, unable to get away from you quick enough hahaha! I read ''For Love of Fat Men'', then played on phone, then read again, then dropped phone as dozed off! May have been the 3 cocodomols I took for back pain ..?
Anyhoo, eventually they came to get me - I took in Deri's small soft fleece blankey to fold and put under my lower back - the small of my back arches quite deeply if that makes sense and last time it hurt, as I have ongoing back pain etc. So, got comfy, got my arms velcro-ed to my side, as you MUST remain perfectly still (don't forget to mention you're claustrophobic if you have one of these offered to you!), and then in we went, into the giant fat polo that is the PET scanner - part polo, part tunnel, but a short fat one. Anyway, as I had looked at it all last time, I thought I's just close my eyes and do some nice deep breathing as I used to do in yoga all those moons ago... woke myself up snoring ....... I hope that provided them with a giggle on the other side of the glass as there is a 2 way microphone so you can call them or them give you directions etc :)))
Today was reflexology day at Usk House, and a coffee later with Kerry. what a lovely blissful foot rub that was!! And then Kerry said, lunch at hers.......nomnomnom, beans and cheese on toast! Perfect comfort food, because I have been through the mill in regard to my emotions and thoughts in the last day or two!
Firstly, because I have gotten myself into a huge flap about having the transplant! I KNOW that it will be fine and I will be doing my kids a favour in the long run etc etc, by being here! BUT - I am SOOOOOOO tired now. I feel I need boosting up from all sorts of areas in order to feel ok enough to start it! Last night I was a bit of a tizz, trying to work out if there was an alternative, and not wanting it done at all!!!
Then Crap Dad called this morning. Wondered why I hadn't been in touch. Hmm. Pot. Kettle. Black. Anyhoo. Asked what was the next thing etc. I said about the transplant and the possible 3 week stay and how my mum couldn't do it for 3 weeks as not well enough and how I'd need to call on everyone to help out so I could make a rota.
Know what he said? ''Hmmm, well, we're all the way over here (WestonSuperMare) and I can't get over unless Marilyn's driving, sorry". In his next breath he told me how my stepmum (Marilyn) has had her money through from her crash last year, and she's been so stressed over her two daughters difficulties with a) pregnancy and b) miscarriage, and her own scare with lump in breast that is clear now, that they'd treat themselves to a week in the Maldives. Then, as they live in a big caravan (renting out their own perfectly fine house??) and have to be off site one month a year, they will come back and rent a cottage for 3 weeks, down the road from the site.
Oh really? Not just down the road from me, to see if my kids may need some support.
not a holiday in Cornwall and then an offer to give their grandchildren some funds for treats as they've had such a hard time so far?
Noooooooooooooooooooooooooooooooo, silly me. He lives up to his name of crap dad eh?
Grrrrrrrrrrrrr.
Ah well, his loss.
Tomorrow - Rituximab day. Must remember to take a nice packed lunch so don't have to suffer the perils of hossie sandwiches ;)
I had a lovely thing said to me today, which is another reason I want to do the secret thing with my diary... "i'm gonna learn from you the way you turn what could be negatives (some are lets be honest) into more positive situational thinking."
Wow!!!!

Why some days are harder than others

Bit introspective today, so just scroll to next person if you don't want to read my blatherings :)

It's hard sometimes to read of so much shit caused by cancer.

Some days visiting the Macmillan website is amazingly helpful, occasionally I just can't read any more about pissflapping cancer! I am sorry if that upsets anyone. It may be the reason I am not commenting every day. Weird how you are not always you when you're going through this fight. Oh yes, totally understandable, but how frustrating too!

And sometimes being a single parent with cancer hits me hard, most of the time it's fine, and I have amazing support, but cancer fucks with your head, as we all know! Of course, it's only useful having a partner when you have cancer if they don't run away or stick their heads in the sand and are of some use to you, I also realise that. Yes, I have my daughters here with me. But you can't lean on them when you want to be comforted or just hugged to sleep, too much pressure on them. And what is annoying me, is that I was ENJOYING life as a single person, rediscovering bits of myself (although the bit of me currently masquerading as a voluptuous belly may take some more time) and taking up new or forgotten hobbies, appreciating the laughs I have with my friends ... so now, the very act of missing someone to be there for me can sometimes really piss me off!

There's no pleasing me today is there?! ;-)

And I suspect some of this is brought on by the fact I am off to Beatrice's funeral today. She was nearly 90, and is the mother-in-law of Deri's teacher, Jan. We sometimes sat in the Windsor suite together as yes, she had cancer too. She hated being bald and a lovely little OAP style wig, which occasionally would sit skewiff on her head :) She was a lovely woman, very sweet. She had been fighting it a little while longer than me. And in about November her strength started to go.

Jan's daughter was expecting her first baby in December, and it was a little late, as usual. Beatrice was poorly and admitted to the same ward as me when I was in, in December. On the Tuesday, the baby was born; he was brought up to see B Friday morning. By now she was not fully awake often but seemed she could hear people and respond a little. Her granddaughter sat and told her all about her baby, then went home.

On the Friday night I was a little agitated, wanting to try and catch Jan before she left the ward. When I saw Jan I knew why I had been restless. B had died. I think she was waiting to 'meet' her great-grandson :)

So I asked Jan last week if I could go to see B off. Because I liked B, and because Jan has been very supportive to me and Deri. So that's where I am off to shortly. Bright Blessings to Beatrice and her family!

Bumper 'Harvest' ; or, When My Luck Was In

Yesterday's stem cell harvest, day #1 of a possible 3, turned out VERY well and I did NOT need to go back :)))

They told me that they needed a stem cell level of a minimum of 0.8 to proceed (I was not made aware of this before the day and so was unaware that I could have been sent home again an hour after arriving, which was a little unsettling as I had nobody with me to take me home, having arrived by taxi and due to be picked up again at 5pm!) - they came back and said it was a level of 14, so, huzzah!

I was then wired up to the machine (I will try to add photos later) and told my arm with the cannula in had to stay completely still for SIX hours. Fab. ?? The big seat I was in was fully adjustable from all angles so that stopped me getting backache too badly. I had to drink very little as unable to be taken off machine for 6 hours, so either wait for a pee , or have curtains around me and use a commode. I managed to hold out for 6 hours.

This is a personal record for me and I wish it to be officially recognised. Thank you.

I tried to read my book using one hand and/or my lap. This was managed in short bursts. I played games on my phone, using my left hand. My signal was sporadic so could not text very frequently nor get onto Macland etc.

I resorted to taking photos and video footage of this bloody amazing machine! I guess its similar set up to dialysis? Other patients who came and went in the chair opposite me, having bloods or chemo etc, stared with open-mouthed amazement at the magickal machine. I felt like something out of a weird sci-fi film.

So much blood gushing into the machine! How can a machine recognise plasma and stem cells out of blood and separate and sort them into separate bags?? Fab! I had none of the side-effects mentioned. Just after it started up, I had a metallic taste in my mouth for a few minutes, but that was that. Oh, and feeling very sleeeeeeeeeeeeeeeepy.

At lunchtime the People From The Lab appeared and took a sample from my stem cell bag to give them an idea of how much I was producing and therefore how many days I'd need to be attached to machine. At 4pm, they told me that they need to collect between 2-4 'bags' worth of stem cells, 2 for transplant, 2 for spares. I had given them enough for 10 bags. HAHAHA! So I did not need to return at all! Huzzah again!

At 4.30, they disconnected me and I had to sit up carefully, and flex my by then very numb and stiff arm! Then go to the loo, have a drink, perform like a normal person (that took some covering up I can tell you!!) and the released! The pee was such a welcome one!!!!!!!!!! And then the coffee I bought downstairs was bliss!!

No bruise where cannula was inserted. Yay!

Just as I thought I was spared the hospitals for the rest of this week, the Heath called again this morning. Can I go in Thursday for a PET scan? This time it's an hour long and with arms above my head?! Joy. My back is already sore, so I told them I'm taking a small cushion for the small of my back and if the scan has to pause or be cancelled because I'm in pain, then so be it! I know I have to have this as its important for checking staging and progress etc etc, so let's hope my back behaves :)

Countdown to harvesting!

Been a bit absent last few days as had visitors Fri and Sat and Sun! Saturday was GREAT as it was my friend that I lost touch with 9 years ago! We couldn't stop hugging and our kids - who were also really close back then - only took 5 mins to get over the awkwardness and we all had SUCH a lovely day!! :))) Plus - Eils made one of her scrumptious chocolate cakes with choc icing and choc hearts on top. YUM. I had forgotten how scrummy her cakes were. We were so thrilled at being together again, and have made lots of plans for doing STUFF :))

Today went for bloods - if they were not behaving the stem cell extraction would not be able to begin tomorrow - but all was well. Also had appointment with my fibromyalgia consultant (diagnosed 2 years ago) who said it's a small possibility that something we thought was fibromyalgia was start of lymphoma but we won't know until I've finished my cancer treatment and then see if any symptoms improve regarding the fibrowhatssit as I prefer to call it.

Interesting.

So I take my backache-inducing GCSF injection again this evening. Then take one with me to the Heath tomorrow for some reason? I mean, if I need to have one ready for Wednesday, then surely I can just take it at home as usual??

Talking of tomorrow, I am being picked up by taxi at SEVEN THIRTY AM!!! Ugh. And they will pick me up again at 5PM! Bloody long day! And I shall have my stem cells harvested. I wonder if they can plough me too?? Sitting in a chair watching my blood run out of a cannula into a machine where the stem cells are plucked out and shoot up into bags and then the blood carries on back into me probably via the Hickman... should I take one or two books or will my eyes be glued to the machine all day? ;)

I wonder whether or not they get enough cells in one day, or if it takes two, or even three (keep fingers crossed for maximum of two!!)

Consulant Chat

So I went to the hospital Wednesday for bloods and to see Dr P-J (no she isn't a pair of pyjamas).

Whilst I was there I saw a young lad and a worried looking mum and they looked like First Timers. They were taken aside for a chat and then one of the nurses asked if I would show the lad (maybe 17-19 years old?) my Hickman Line as he was having difficulty understanding what she meant and he was being booked for one. Soo I went and showed him and told him that it sounded weird at first but was in fact very useful. I stopped short of advising him to have a general not a local when it happens! Then he was out in a chair opposite me and wired up to the drip and I smiled at him and asked what he was having today, and he shrugged like he didn't care and said he didn't know, he left all that to him mum to listen to. The nurse half joked with him that that wasn't good enough. I asked his mum if it was his first session and she nodded. He was having ABVD. SO I said the speech about everyone reacts differently but I'd been fine and he may be able to still work p//t depending on what happens etc. The poor lad looked totally in-denial-and-shock and I wanted to cwtch him and his mother. Fucking cancer!

So, Dr P-J examined my neck and said she could feel nothing - I explained Lumpy did start to swell again before I went in, and she said that is why we are cracking on with getting the stem cell stuff done, as my lump responds quickly to chemo but doesn't disappear - stubborn bastard! That's what you get for being an awkward cow with a rare (1-3% likelihood) form of lymphoma that is quite possibly as stubborn as oneself ... dammit! But there is the good ol' NHS spending a lot of money on me to make me better. So, combined with friends' support and the familys' support and everyone's love and some peoples' prayers and others' blessings, along with my determined-ness (ooh new word) and Kicking Pissflapping Cancer's Arse attitude, we're nearly there guys and gals ... well, nearly at end of this particular stage. Coz I know there will be maintenance and top-ups and blood tests etc for a while after the transplant, and we don't know when the transplant will be yet! The staff nurse said it wouldn't be too long due to the situation. And I didn't get a chance to ask her what she meant by that as the consultant whisked me off for the Chat.

So I will now have a CT and a PET scan in the first week of Feb - even if these show that there is no cancer visible, we're doing stem cell anyway to make sure Lumpy DOES stay away (as far as possible coz we know how tricksy cancer can be!)

Add to that the 3 days of out-patient for harvesting stem cells at end of this month and a meeting with my new stem cell consultant (Keith from Trinidad) on 7th Feb, and I am pretty much booked up for appointments!!

Talking of being booked up, the next few days are a bit barmy - coffee with JW tomorrow morning, then LV is down from Cardiff for lunch. Saturday, EB, a friend I am reunited with after 9 years is coming over with 3 of her 4 kids (one being at Uni) for lunch, catch up etc! Sunday K is down visiting family and coming over for coffee and natter. And my friend KN, just recovering from removal of thyroid, and I are going to cafe on Monday for a treat. Which is all good as it distracts me from going in for stem cell harvesting Tues-Thurs ;)

And my lovely 14 year old has come in from her first gig (apart from going to festivals with me) in a venue instead of a field and went in the mosh pit and did crowd-surfing!! She is a Very Happy Womble indeed :D

And its 1am!!! Get to sleep woman!!