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!
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 likedmy 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...??
Thank you, all of you, for being amazing to me, and sending so much love and support! As one friend said, it was all the love that helped. And she was right :))
