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!
Tuesday, 19 June 2012
Friday, 15 June 2012
Well I never. At least that's my story and I'm sticking to it ...
Blimey I have left it a LONG time between posts!!!
It's possibly down to it being a kind of ''in limbo'' time, waiting, waiting, waiting .... waiting for appointments, scans, ops, results... always with this cancer malarkey it is about waiting... waiting for your brain to catch up with the latest information from your consultant, waiting for that niggle in your arm/back/leg/head to top, because if it doesn't, is THAT cancer too?? Waiting for news, for the chance to REALLY relax, waiting for the endless round of swirling thoughts to STOP. Waiting to hear it is gone, it's better, you're clear... even though you know if & when that happens, you will always wait anyway, keeping a weather eye out for any ...any what?? Symptoms? I had none. None. I found a lump and I didn't like how it *felt* and I nagged my GP, then had to demand, but if it hadn't protruded from my neck, if it had hidden, what then?
And I guess this thought process is also partly due to friends, new and old, who are also on this journey, and I am frustrated and concerned for them too. Cancer is a bastard. For the person with cancer, and for everyone who knows them. It screws with you, and there's headfucks as well as the physical stuff. So, screw YOU, cancer!
Unremarkable weeks since last post, insofar as my weekly tube flushing goes :) Waiting for date for PET scan, and date to have Hickman line removed. And the 26th June seeming to take AGES to arrive - the date I am due to meet the stem cell consultant, and get my results of the PET scan. What was wonderful was me calling the Windsor suite on Thursday last week, needing to order repeat prescription...they asked if I was going to town anyway or making special journey in to pick it up later? Well, the latter, but that's ok...... 'no its ok' says Jodie, 'Kay is driving past yours later, she'll drop off the tablets for you' ....... WOW, talk about 1-2-1 service from the NHS!!! :))
Suddenly, last week, I think on that very Thursday, a phonecall from the Heath.... come in on the 11th for the PET. Yay! Went in, and greeted with ''sorry, the machine isn't working, but we are fixing it, hopefully in time for you to be scanned, do you want to go off and find a coffee?'' Nope, coz if I'm not in the waiting room when/if it is fixed, then I miss out on a scan and I can't be late as have a 7 yr old to pick up from school which is at least an hour's drive away, thanks :))
So we lurk, my mum and I, and only 1 hour later, I'm called in. Have my own special isolation room with HEAVY door to get injected with radioactive dye behind and for the nurse to then run out... and I am tired, so rather than read, I curled up on the huge bed/chair thingy and have a nap :) After all, I have 90 minutes to kill. Woken up by amused nurse to swap to scan room, 20 minutes in and out the giant polo on the slidey bed, and the guy says, 'should have these images back to the doctor within 48 hours'... that's been said before but I have never had them until official appointment, so nod and count down the days until the 26th!!
Tuesday - get letter.... hickman due out on the 2nd July - YAY!!!!
Wednesday, off I go to Windsor suite for my bloods and tube flushing. Sandra the staff nurse is looking rather cheerful and grinning - must be a good day at work methinks! I sit down and tell them I have an appointment for the 2nd for the hickman. 'Hmm' says she, 'you don't want to wait THAT long!'. She is in the middle of fitting a cannula in a guy's arm... and spins round, without stopping her work, and says, ''thumbs up!''
What is? The weather?? I look blank obviously, as she then says. " I asked the Heath to fax the results over, and it's good, it's clear!"
WHAT??
WOW!!
I'm not supposed to know til the 26th........hang on.....are you sure? Is this right, me, I am ok?? So I ask, ''does this mean I can open the wine tonight haha?'' YES! she says, and drags me off to side room to do bloods/flushing. Registrar comes in and asks Sandra if I know the new...yes, she says she couldn't wait to tell me! Registrar then tells me that the scan shows that I am in complete remission, so no need to come back until September, and isn't it great news? Yes, but I am in shock and don't know what to do except grin stupidly! She goes off to confirm Sept appointment, and I ask Sandra, ''does this mean I can call my mother and celebrate?'' Hahaha what am I like? ;)
So Sandra then goes to call surgeon's department as she thinks there's been a cancellation, yes, Iris (don't know who you are,but thank you!!) has had to cancel as her doc wants to do more treatment, so I am booked in for next Monday the 18th!
WOW.
I leave in a bit of a daze, book app't for 12th Sept (what will I do on Wednesdays til then?!). I text my teens. I try to call my mother... she's in Devon with Bryan and there's no signal at that moment, haha typical. I am due at Tash's for lunch with her & Em M, and to do a reiki session. I drive off in the wrong direction. I decide I can't do Reiki today!! I stop, and try to send group texts but finger don't work. I get to Tash's and we're all nearly in tears with relief and joy! I call in to see Jo, much shrieking. I call mum and get through....can't believe it. When I pick Deri up from school, I tell her the doctor says I am better, no more lumps. 'Oh goody! We're going to the zoo!' HAHAHAHA, how could my news top that? ;) I post my best facebook status that evening!!!!! I opened wine and did NOT cook.... a takeaway was order of the day, and if we have to eat baked beans the rest of the week, well, fuck it!!
I am not sure whether to laugh or cry or dance or collapse in relief! I feel as though I can actually relax, but also, will September bring more good news or not?! I have felt so well, apart from fatigue, that I *knew* the news would be good, but still had WHAT-IF'S. And I suppose that will take a long time to shift, if at all? But, I can be stubborn sometimes, and I was stubborn about NOT leaving my girls alone, and so long may that continue ;) And everyone's responses.........wow...... my friends have cried and hollered and whooped and I am overwhelmed by the strength of their emotions, and I feel sad that THEY have all had to carry this tension around with them too, but I am so proud to have them as my friends, and each one has been a rock! As one friend said, it was the love that did it. And she is right :))
WHOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So, I had to go for my pre-op assessment today. So I called into Windsor suite first to give the team a card, and a homemade brooch each, and they liked my card coz I said they were amazing and they got a bit emotional too haha! :))
So, Hickman out on Monday, it's a local not general, so out again same day - 10 days later, stitches out at Windsor suite, then I let loose, weird!!! Nice weird, but still......... it's been endless, and now it isn't. Whirly Brain Syndrome ... WBS, hmm, may need to improve that so we get a good acronym out of it ;)
What? I dunno, don't ask me, I'm only good for grinning right now, hope you're not expecting too much sense...??
It's possibly down to it being a kind of ''in limbo'' time, waiting, waiting, waiting .... waiting for appointments, scans, ops, results... always with this cancer malarkey it is about waiting... waiting for your brain to catch up with the latest information from your consultant, waiting for that niggle in your arm/back/leg/head to top, because if it doesn't, is THAT cancer too?? Waiting for news, for the chance to REALLY relax, waiting for the endless round of swirling thoughts to STOP. Waiting to hear it is gone, it's better, you're clear... even though you know if & when that happens, you will always wait anyway, keeping a weather eye out for any ...any what?? Symptoms? I had none. None. I found a lump and I didn't like how it *felt* and I nagged my GP, then had to demand, but if it hadn't protruded from my neck, if it had hidden, what then?
And I guess this thought process is also partly due to friends, new and old, who are also on this journey, and I am frustrated and concerned for them too. Cancer is a bastard. For the person with cancer, and for everyone who knows them. It screws with you, and there's headfucks as well as the physical stuff. So, screw YOU, cancer!
Unremarkable weeks since last post, insofar as my weekly tube flushing goes :) Waiting for date for PET scan, and date to have Hickman line removed. And the 26th June seeming to take AGES to arrive - the date I am due to meet the stem cell consultant, and get my results of the PET scan. What was wonderful was me calling the Windsor suite on Thursday last week, needing to order repeat prescription...they asked if I was going to town anyway or making special journey in to pick it up later? Well, the latter, but that's ok...... 'no its ok' says Jodie, 'Kay is driving past yours later, she'll drop off the tablets for you' ....... WOW, talk about 1-2-1 service from the NHS!!! :))
Suddenly, last week, I think on that very Thursday, a phonecall from the Heath.... come in on the 11th for the PET. Yay! Went in, and greeted with ''sorry, the machine isn't working, but we are fixing it, hopefully in time for you to be scanned, do you want to go off and find a coffee?'' Nope, coz if I'm not in the waiting room when/if it is fixed, then I miss out on a scan and I can't be late as have a 7 yr old to pick up from school which is at least an hour's drive away, thanks :))
So we lurk, my mum and I, and only 1 hour later, I'm called in. Have my own special isolation room with HEAVY door to get injected with radioactive dye behind and for the nurse to then run out... and I am tired, so rather than read, I curled up on the huge bed/chair thingy and have a nap :) After all, I have 90 minutes to kill. Woken up by amused nurse to swap to scan room, 20 minutes in and out the giant polo on the slidey bed, and the guy says, 'should have these images back to the doctor within 48 hours'... that's been said before but I have never had them until official appointment, so nod and count down the days until the 26th!!
Tuesday - get letter.... hickman due out on the 2nd July - YAY!!!!
Wednesday, off I go to Windsor suite for my bloods and tube flushing. Sandra the staff nurse is looking rather cheerful and grinning - must be a good day at work methinks! I sit down and tell them I have an appointment for the 2nd for the hickman. 'Hmm' says she, 'you don't want to wait THAT long!'. She is in the middle of fitting a cannula in a guy's arm... and spins round, without stopping her work, and says, ''thumbs up!''
What is? The weather?? I look blank obviously, as she then says. " I asked the Heath to fax the results over, and it's good, it's clear!"
WHAT??
WOW!!
I'm not supposed to know til the 26th........hang on.....are you sure? Is this right, me, I am ok?? So I ask, ''does this mean I can open the wine tonight haha?'' YES! she says, and drags me off to side room to do bloods/flushing. Registrar comes in and asks Sandra if I know the new...yes, she says she couldn't wait to tell me! Registrar then tells me that the scan shows that I am in complete remission, so no need to come back until September, and isn't it great news? Yes, but I am in shock and don't know what to do except grin stupidly! She goes off to confirm Sept appointment, and I ask Sandra, ''does this mean I can call my mother and celebrate?'' Hahaha what am I like? ;)
So Sandra then goes to call surgeon's department as she thinks there's been a cancellation, yes, Iris (don't know who you are,but thank you!!) has had to cancel as her doc wants to do more treatment, so I am booked in for next Monday the 18th!
WOW.
I leave in a bit of a daze, book app't for 12th Sept (what will I do on Wednesdays til then?!). I text my teens. I try to call my mother... she's in Devon with Bryan and there's no signal at that moment, haha typical. I am due at Tash's for lunch with her & Em M, and to do a reiki session. I drive off in the wrong direction. I decide I can't do Reiki today!! I stop, and try to send group texts but finger don't work. I get to Tash's and we're all nearly in tears with relief and joy! I call in to see Jo, much shrieking. I call mum and get through....can't believe it. When I pick Deri up from school, I tell her the doctor says I am better, no more lumps. 'Oh goody! We're going to the zoo!' HAHAHAHA, how could my news top that? ;) I post my best facebook status that evening!!!!! I opened wine and did NOT cook.... a takeaway was order of the day, and if we have to eat baked beans the rest of the week, well, fuck it!!
I am not sure whether to laugh or cry or dance or collapse in relief! I feel as though I can actually relax, but also, will September bring more good news or not?! I have felt so well, apart from fatigue, that I *knew* the news would be good, but still had WHAT-IF'S. And I suppose that will take a long time to shift, if at all? But, I can be stubborn sometimes, and I was stubborn about NOT leaving my girls alone, and so long may that continue ;) And everyone's responses.........wow...... my friends have cried and hollered and whooped and I am overwhelmed by the strength of their emotions, and I feel sad that THEY have all had to carry this tension around with them too, but I am so proud to have them as my friends, and each one has been a rock! As one friend said, it was the love that did it. And she is right :))
WHOOOOOOOOOOOOHOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So, I had to go for my pre-op assessment today. So I called into Windsor suite first to give the team a card, and a homemade brooch each, and they liked my card coz I said they were amazing and they got a bit emotional too haha! :))
So, Hickman out on Monday, it's a local not general, so out again same day - 10 days later, stitches out at Windsor suite, then I let loose, weird!!! Nice weird, but still......... it's been endless, and now it isn't. Whirly Brain Syndrome ... WBS, hmm, may need to improve that so we get a good acronym out of it ;)
What? I dunno, don't ask me, I'm only good for grinning right now, hope you're not expecting too much sense...??
Sunday, 27 May 2012
Whilst the cats are away...well, kids anyway...
Last Wednesday was unremarkable as far as hossie check goes, didn't want my bloods either so left early, which was useful as had to finish getting D and B sorted for their hols, and drop off at mums... they were all staying there to set off on early flight the next morning :)) Very exciting!
Which meant a week of complete spoiling, and it was wonderful! I woke up around 10.30 each morning... blissful lie-ins! I had a visit from Lou, and Pam took me out to dinner and Em took me out for lunch :) M and B were around half the time and we had some nice times together too :) And this weekend B has strimmed and mowed - been an absolute star ... and then Mark from next door offered to spray the nettles with duck-friendly spray and help find some materials to make raised beds for beg too (he lives next door and works on the estate - always handy!)
This Wed I had bloods and all ok again, plus picked up a Macmillan grant application form. Apparently my hickman referral was 'lost' by someone's secretary so they did a new one, so maybe THIS week I'll get a date! ;)
It was my penultimate night with no kiddies, so had a little G & T sat out under the tree :)) The glorious weather is just superb and I am feeling quite perky and getting into summer party mode - we had our first bonfire of the season last night :)
It's mixed blessings as I have friends with new diagnosis, friends facing scans, friends whose dog has died... so I am sending them all huge hugs and love too. Life IS a roller coaster, I don't care what anyone else may say!
And then Friday morning, picked up my girlies!!!!!!!! :D Lots of cwtchs and lots of holiday tales especially from Deri! ;)
This eve, Lou came down again, and we were off to watch "As you like it" by a company called Come Rain or Shine (always perform outside) on Glanusk, and meeting Gez n Em too. Deri came along and LOVED it which was great coz it lasted 3 hours and she was transfixed by it all, once she had asked me a few questions about who was who haha! And very wonderfully, we had 2 free tickets given to us by Mark's brother! It was great show and the performers were fab. Must go to the next one :)) Lou had to disappear to get back for baby Vince, and I put Deri to bed and went over to Gez and Em's for a nightcap :)) So now it's 2 am and I should go to bed :))
Life is feeling good again, so it had better frigging stay that way!
Sunday, 13 May 2012
The evidence says ...
Forgot to update re: Wednesday's appointment! Too busy having coffee with friends....... ;-)
Saw the consultant after I had been flushed.. she confirmed that they would book me a PET scan about 2 weeks before my checkup, I said ,, 'oh good, we can see if it worked' ... she said, by looking at me and how I look, the evidence is pointing towards me being fine... I LIKED that positivity :)) Let's see what they all say in June! :)
It was brilliant to see two of my loveliest friends on Wednesday too. In July I am going to have a big birthday bash and have as many of my friends there that can make it :)) It should be a celebration of all sorts!!
Monday, 7 May 2012
Bank Holidays and Countdowns
Well, it's mostly raining so it MUST be a bank holiday ;)
Looking forward to a few things this week ... coffee at Lynne's Wed morning before I have tubes flushed (haha not for long!!) and then coffee and catch up with LM on Wednesday after we have both had our appointments... haven't seen each other since before we both went in for ops and transplants so we can have a more relaxed coffee and not pretend we're not scared haha :)) Thursday my favourite midwife is taking me to lunch!! How spoiled am I?
I was moaning about how long it will take to get check up etc and suddenly we're already 1 week into May which means it's only 6 weeks til I go to the Heath again?! I'll try to remember this week when I'm down the Windsor suite being flushed, to ask if I'll be having scans etc or if they can just tell from bloods, which seems unlikely to me but then who knows! Saying SHUSH to the What-If's because I can't be worrying about nonsense like that for the next 6/7 weeks!
My legs are now normal, apart from the mottled skin, but at least I don't look like some frantic skin-shedding freak any more ;-) I'm putting cream on my hands and face as they are stil a bit dry. My energy levels are still low but much better and I can pootle around more now. Looking forward to doing stuff in the summer now, when I'll be even more 'myself' ;)
I have a house full of my free range teens and their boyfriends today! Deri is lurking with Broni and hers coz they are watching Harry Potter and I am in my room with my feet up on the sofa :)) Megz wants to go clothes shopping and Ben doesn't and they don't know what else to do so they've ended up cleaning and clearing her room hahaha! If only it wasn't raining, I'd have them mowing the VERY overgrown lawn ;)
My mother had some tests and it seems it is not angina which is good, but her lungs aren't functioning properly so probably get more pills! Bryan's hip hurts lots so we need to get him to the GP coz he's beinga 'bloke' and won't go; Aunti Phyl (Bry's last living relative at 93 yrs old) is deteriorating and so they're going to check on her, in Devon, tomorrow..she won't go into hospital in case she doesn't come back out bless her. So sending all of them healing hugs and blesings too!
The donations for the Race for Life keep increasing! HUGE thank you's to everyone for being so generous... I am looking forward to it very much!!
I think a nap might be in order, although it'll be light coz Deri is lurking!
Wednesday, 2 May 2012
Hickman, you're on your way out!
Wednesdays seem to roll round quite quickly.
I took a while to wake up properly this morning, on a Go Slow mode... Deri asked if I was ok today because I was talking slowly... bless her! So on the ball. Makes me proud of her but sad that she has to have that little niggle to deal with. I told her I was just a bit slow this morning! She's excited too because her new friend from her new school is coming for tea! ;-)
Anyway, it was tubes flushed AND bloods and dressing change today, so off I trooped. Had a chat with Sandra about kids crashing their cars, chatted with a lady who can't find a good aromatherapist, I said I used to do that but for obvious reasons don't do it right now - she said could she call me in a few months and see if I was doing it again? Hmm, this could be interesting :)) Also bumped into a lady who was waiting to have her spleen out the same week I was due to go in for transplant - she was on a bed having chemo - she said it was her first session as when they took the spleen out they found out she had NHL - oh I said, "oh same as me... you'll do just fine. Well, I am sure she will, but felt sorry for her when thinking of possible bone marrow tests and maybe the SCT... I was wearing my scarf I got from the wig shop, she liked it and we chatted about wigs and cutting hair shorter and getting funky with hats and scarves... I never wore anything like that before, apart from a sunhat occasionally, so I have learned a new skill - tying scarves in comfortable and acceptable ways hahaha!
Good news, my bloods were all very good, and a referral has gone in to get the Hickman line out - whhoohooo!!! Can't wait for that :))))
Popped in to see Jo and ended up having lunch there which was fab, then had an email from a certain "TinTin" who says there are 2 trollbeads winging their way over from Luxembourg?! I am rather spoilt methinks!
I feel very positive and as though everything is working, but there's tests and scans and checkups to come and that's a bit of a drag as I want to say goodbye to it all now! But then that's a bit impatient and you have to be more cunning than that when dealing with stoopid cancer :D
Wednesday, 25 April 2012
Improvements
So what's happening this week? Well, the dry skin is still with me, but the intensive peeling on my legs is improving and I no longer leave a shower of skin on the floor when I get undressed etc!! As my skin peels the ''chemo tan'' is fading but I still have it on my face and chest. My nails grew really long, I lost my hair again (all over body too) but my eyebrows and eyelashes have STILL hung in there!
My energy levels are slowly improving and I can now cook a meal or wash up without feeling utterly exhausted... I do have to sit down afterwards but I don't feel wiped out anymore!
Went to have my tubes flushed today, and the doc came over for a chat too, and said they are thinking of getting me a date quite soon to have the Hickman line removed! I will be waiting impatiently for the 3 week healing period then so I can lie immersed in a bath up to my chin, after so long with a shallow bath haha!
And, the sponsorship target has had to be raised as we smashed it in 3 days!! :)))
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