Well, I am up at silly hour despite feeling tired and trying to go to bed, because I was then plagued by a whirlwind of crap thoughts. I do have some good stuff to say as well, but I find it best if I vent my angst, then it may leave my head long enough to allow some repose ;)
Deri's father, my ex, or twattybollox as he is affectionately known to lil ol me, has been absent for about a month. This followed about 2 weeks of phone messages/voicemails asking to see her despite having had an ultimatum, given because of severe lack of responsibility/regular contact/no maintenance etc, all due to him becoming a massive alcoholic/drug abuser and throwing in some DV for good measure. His last chance was something he fucked up massively, and we may need to do things like injunctions etc. He also knows I am not well. Out of the blue last night. He said he'd come round to drop off stuff, I reminded him he was banned and if he showed up I'd call the police, and that I'd been told he was in no fit state to see her anyway. He then said something about doctors notes and court and judges, so I said how very VERY low of him to threaten ME with court whilst I was going through chemo.
I didn't get another text then. Funny that. #stupidbastard.
AHEM.
Then, tomorrow is my rituximab/antibodies day (weekly now). It usually passes without much adventure, I am usually like a woozy zombie and fall into bed afterwards, so it should be routine. BUT. I am awaiting results of the bone marrow biopsy etc. And then I started THINKING about it all. Such a BAD idea I know! So I started thinking about the processes... the lung function tests and dentist checkups etc. I guess if I fail those, I can't have the stem cell treatment? I am expecting to pass with flying colours, but at 1am, it all swirled around in an ever decreasing circle or WHAT-IFs, together with anger and frustration about the ex and why Deri should have to a) have to suffer a father in such a state and b) not be able to have a father BECAUSE he is in such a state, and not looking forward to more hospital stuff and and and and and.......................................
So. Light back on, hot chocolate with mini marshmallows and toast with special butter, laptop on and a rant in full flow! :)
And I have already blogged about what a nice week I had last week ..... to add to that loveliness, I have to say that my daughters really spoiled me with very thoughtful gifts on xmas day, bless 'em :) And of course Santa was very good to them too ;) And a table groaning with festive food at my mother's, with more gifts (and a trollbead yay!), and a lovely time there, mum loved the Welsh slate clock and then in the evening, onto my stepsister's, where this always a huge buffet and her hubby's converted garage which is now a ''pub'', with a bar, optics, bar stools, wooden table with church pews, a Wii and a screen for when the sports are on!! Another trollbead there too! As I treated myself to one on xmas eve, and as a certain person treated me to one last week, I now have 6 and I'm loving how the bracelet is taking shape :))
I LOVED spending so much fun time with my kids and my family. We have made things and played things and laughed and just been fab. And I had two friends turn up, from different places, with home made goodies - K came with sloe gin, and her hubbys hand made body butter, and S turned up with a hamper he and his wife made - all home made, wine, chocs, shortbread, etc. I have very much felt the lurve, maaaan...........................
Anyway, I had better read a bit or something now, and get some snoozes in before the alarm goes off at 7am!
Hugs and love and spoons xxxxxx
Wednesday 28 December 2011
Friday 23 December 2011
Friends, Birthdays, Trolls and Babies
Well, this week has, I have to say, been mostly, Bloody Lovely :)
Monday - two friends from work wanted to have a catch up as not seen them for months, and they treated me to a pot of tea and a jolly good laugh at the Angel. Had a good ol' natter, made me miss work and wonder how I ever did so much haha! :) I then decided I would go and see what all the fuss was about the new improved Waitrose, and in the new John Lewis section, found a a tiny box containing magnetic ladybirds/ or frogs - blast from the past!! I had the frog ones as a kid, the magnets repel so when you face them nose-to-nose they spin around! :) I bought ladybird ones to go in Deri's stocking :))
Tuesday - reflexology in the morning, then met LM for lunch and coffee and trollbead hunting and chats and giggles :))) Came away with more smiles and a surprise bead!!
Wednesday - Rituximab day at hospital (no reactions, seem to be behaving now) - lift there and back from mum, who also took Deri shopping whilst I was there, and drove me home with Bry so we had an Early Birthday Tea for Broni :)) Nomnom!
Today - B's 14th Birthday!! She brought ME tea in bed bless her, and then we opened everything and she loved the new black shiny acoustic guitar I bought :)) She has been practising with an old 3/4 on and so I was thrilled to find her this one, plus it's black to go with her grungy look ;)Off she went with Charlotte then for birthday lunch at Frankie & Benny's! Lou came over for lunch , with baby Vince! I had cwtchs and he burbled at us and was very cute indeedy, and chatted with Lou and it was bliss and we pigged out at lunch and even D came in same room as the baby this time haha!
So, for all my whinging and gnashing of teeth, which is still valid of course ;), I have had a fab week so far, all because of my friends and family :)))
And it's the Solstice today and the sun returns and I am sending blessings of strength out there for me and for my family and for my friends. Love you all....
Monday - two friends from work wanted to have a catch up as not seen them for months, and they treated me to a pot of tea and a jolly good laugh at the Angel. Had a good ol' natter, made me miss work and wonder how I ever did so much haha! :) I then decided I would go and see what all the fuss was about the new improved Waitrose, and in the new John Lewis section, found a a tiny box containing magnetic ladybirds/ or frogs - blast from the past!! I had the frog ones as a kid, the magnets repel so when you face them nose-to-nose they spin around! :) I bought ladybird ones to go in Deri's stocking :))
Tuesday - reflexology in the morning, then met LM for lunch and coffee and trollbead hunting and chats and giggles :))) Came away with more smiles and a surprise bead!!
Wednesday - Rituximab day at hospital (no reactions, seem to be behaving now) - lift there and back from mum, who also took Deri shopping whilst I was there, and drove me home with Bry so we had an Early Birthday Tea for Broni :)) Nomnom!
Today - B's 14th Birthday!! She brought ME tea in bed bless her, and then we opened everything and she loved the new black shiny acoustic guitar I bought :)) She has been practising with an old 3/4 on and so I was thrilled to find her this one, plus it's black to go with her grungy look ;)Off she went with Charlotte then for birthday lunch at Frankie & Benny's! Lou came over for lunch , with baby Vince! I had cwtchs and he burbled at us and was very cute indeedy, and chatted with Lou and it was bliss and we pigged out at lunch and even D came in same room as the baby this time haha!
So, for all my whinging and gnashing of teeth, which is still valid of course ;), I have had a fab week so far, all because of my friends and family :)))
And it's the Solstice today and the sun returns and I am sending blessings of strength out there for me and for my family and for my friends. Love you all....
Monday 19 December 2011
Given a nudge
A friend asked me this today - ''Is it my imagination, or are you struggling with something other than your illness''?
Maybe I am; I have certainly neglected this diary and up to now it has been quite cathartic. I think I have been knocked for six by recent events and come up against a brick wall, on many levels. So, to address the question:
Hmmm....... good question. I don't know, am I? If it only it was just the cancer itself I had to deal with. With it come so many other things. On many levels. Such as worry about the girls. Worry about work/keeping job. Pissed off that just as I was getting sorted again and was in an enjoyable job and had enough money that it's all been sent up in an uncertain tornado again. Disappointed in certain people, although thankfully not very many. Frustrated that I need help and support, especially from my mother in regard to the children, and feeling suffocated by it at times. Fed up feeling weak and tired and unable to enjoy my friends' company for very long. Having to deal with people who either head-tilt or avoid or panic or run off, and then deal with the moment where (sometimes) they then apologise
for doing it. Worrying that if I go on long term sick, will I afford the rent? And underlying it all, barely within hearing, the constant nagging doubt and fear of test results and scan results and the 'what-ifs', because no matter how strong or positive you are, how can you always avoid all that? It creeps up when least expected. You keep smiling because it helps everyone around you. When you cry they panic and imagine something awful. I KNOW that I will be ok, and that things will get better, and that I am kicking cancer's arse. In 6 short months my life has been
turned upside down and inside out and that would be ok if it hadn't affected my kids too. And when you get settled with one treatment plan or one type of medicine then they change it if your lumps play up, which can happen at any time because cancer can be tricksy, and a wave catches you up and throws you around and nothing is certain anymore. And however tired or sad or scared you are, you have no choice but to be ''brave'' and carry on, because there is no other choice, whether you will be better in 3 months or 6 months or 6 years, you have to go through whatever they want to put you through. You could go alternative, eat raw food 24/7 and juice everything you encounter, and I'd love to be able to have enough faith in that
because it's what I have tried to follow in my life, but ... ... ... and yet, this chemo etc, it's working it seems, but can have all sorts of side effects. So I am doing chemo and making juices. I have a Hickman line in my chest, and I make positive affirmations to myself. Someone said living with cancer, however long for, is like living with white noise. Always there, whether the cancer or the side effects or the concerns that come with it. I'm not as relaxed as I used to be. I have moments, but they're not the same. I am VERY lucky, because I have tremendous friends too!! Oh yes, everyone, and I am bowled over by the support, in its many forms, and I hope you all know how much it means to me to be treated as
normally as possible and to just 'be there'. I know for sure that I AM loved. I know how fucking strong I can be, more than I realised. P says she thinks I look angelic at the moment!! My head is all over the place, but I DO know where I
am focused, and cancer can jolly well fuck off. Small things make me smile, give me tears of joy, more so than before, and I have always been a soppy sod! I have pangs of terrible envy when I hear someone has just had a fabulous day/trip/holiday, and I rage for a few minutes about why MY life isn't so fucking easy right now. But then I sit with my daughters and we laugh and we share silly moments, or I walk the dog and find rainbows to take photos of, or a stranger catches my eye
and grins at me, and I know that it'll be ok.
As they say, 'this too will pass.' It's just a shit that it happens at all! ;-)
Maybe I am; I have certainly neglected this diary and up to now it has been quite cathartic. I think I have been knocked for six by recent events and come up against a brick wall, on many levels. So, to address the question:
Hmmm....... good question. I don't know, am I? If it only it was just the cancer itself I had to deal with. With it come so many other things. On many levels. Such as worry about the girls. Worry about work/keeping job. Pissed off that just as I was getting sorted again and was in an enjoyable job and had enough money that it's all been sent up in an uncertain tornado again. Disappointed in certain people, although thankfully not very many. Frustrated that I need help and support, especially from my mother in regard to the children, and feeling suffocated by it at times. Fed up feeling weak and tired and unable to enjoy my friends' company for very long. Having to deal with people who either head-tilt or avoid or panic or run off, and then deal with the moment where (sometimes) they then apologise
for doing it. Worrying that if I go on long term sick, will I afford the rent? And underlying it all, barely within hearing, the constant nagging doubt and fear of test results and scan results and the 'what-ifs', because no matter how strong or positive you are, how can you always avoid all that? It creeps up when least expected. You keep smiling because it helps everyone around you. When you cry they panic and imagine something awful. I KNOW that I will be ok, and that things will get better, and that I am kicking cancer's arse. In 6 short months my life has been
turned upside down and inside out and that would be ok if it hadn't affected my kids too. And when you get settled with one treatment plan or one type of medicine then they change it if your lumps play up, which can happen at any time because cancer can be tricksy, and a wave catches you up and throws you around and nothing is certain anymore. And however tired or sad or scared you are, you have no choice but to be ''brave'' and carry on, because there is no other choice, whether you will be better in 3 months or 6 months or 6 years, you have to go through whatever they want to put you through. You could go alternative, eat raw food 24/7 and juice everything you encounter, and I'd love to be able to have enough faith in that
because it's what I have tried to follow in my life, but ... ... ... and yet, this chemo etc, it's working it seems, but can have all sorts of side effects. So I am doing chemo and making juices. I have a Hickman line in my chest, and I make positive affirmations to myself. Someone said living with cancer, however long for, is like living with white noise. Always there, whether the cancer or the side effects or the concerns that come with it. I'm not as relaxed as I used to be. I have moments, but they're not the same. I am VERY lucky, because I have tremendous friends too!! Oh yes, everyone, and I am bowled over by the support, in its many forms, and I hope you all know how much it means to me to be treated as
normally as possible and to just 'be there'. I know for sure that I AM loved. I know how fucking strong I can be, more than I realised. P says she thinks I look angelic at the moment!! My head is all over the place, but I DO know where I
am focused, and cancer can jolly well fuck off. Small things make me smile, give me tears of joy, more so than before, and I have always been a soppy sod! I have pangs of terrible envy when I hear someone has just had a fabulous day/trip/holiday, and I rage for a few minutes about why MY life isn't so fucking easy right now. But then I sit with my daughters and we laugh and we share silly moments, or I walk the dog and find rainbows to take photos of, or a stranger catches my eye
and grins at me, and I know that it'll be ok.
As they say, 'this too will pass.' It's just a shit that it happens at all! ;-)
Tuesday 13 December 2011
Home again, home again, jiggedy jig
Isn't sleep lovely??
Anyway, where were we? Ah yes, the bone marrow biopsy day. I left the last blog, then as I was about to tuck into bed, felt sick; it seems maybe a dodgy sandwich ma have set me off, but I filled a bedpan (remember they left me a stack to measure my wee?) with a days worth of vomit. Haven't felt right since! Anyway, Thursday had a couple of visitors, with more books! :) Also had to lie on one side as I was indeed feeling as Sandra the nurse had described.. as though I'd been kicked like a horse!
Also wanted to share all my experiences with my mother but knew it would add to tension and had to wait. More cwtchs from Deri Thursday evening! :) (Just remembered - Mum also got her bouquet last weekend, Pam helped me sort it out.)
Friday was a quiet day so I slept, which was fab. Didn't eat much as the hospital food seemed to get worse this time in, plus feeling nauseous anyway.
Megz and her b/f turned up again Friday, with tales of tense atmospheres. I began to think how I could split up the week next time so my mum and stepdad don't need to have the kids all week, because it just knackers them out! Mum, Bry & Deri turned up as well, looking tired! Ok, shall we go over the pro's and cons of being a single parent again now??
Came home Saturday, feeling ok but queasy. Bryan tried to rant about the kids' behaviour but I soon shut him up - wtf?? Timing dear man, timing!! Proves how overtired they were, how my mum's stress can impact on him etc, otherwise he wouldn't have tried ranting as I'm hanging out of his car window. Plus, teens ARE often moody or grunt at you, and 7 yr olds are hard work , PLUS, maybe my 3 girls were stressed too and being a bit gruff or hyper occasionally is probably expected, no?
So, sat down with a cuppa, all kiddies out, and told mum and Bryan everything. So that's out of the way. Told Bryan the holiday in May may not be able to happen due to SCT (stem cell transplant, look at me with my abbreviations), or perhaps swap names or something. Mum wondered of B and D would still want to go without me. I have reservations - 1) B would prob go if M there too as they could hang out etc, but B won't want to always do stuff with D when D doesn't want nan to do it etc.
2) if B, god forbid, acts like a teenager whilst being a teenager, or Deri gets a bit full on, mum and Bry can get stressed and then there will be rows and recriminations. 3) if D and B DO play up unnecessarily, it will spoil nan and bry's enjoyment! 4) if I'm there I can smooth things over/ humour folk, or take my kids off and have a word if needed without needing to stress mum out etc.
Maybe they should take mum's sister and hubby and just lose the money for Deri, and my kids can go somewhere later in year, plus of we take Deri to Tenby one sunny weekend, she won't care where in the world the beach is!
Mum stayed here Sat night and cooked a lovely Sunday lunch, then headed off about 4. Monday I went back to sleep after D went to school, mum came over with a pan of bolognese for us to warm up later for dinner, and a nice fresh salad with prawns for lunch with fresh bread rolls. She is a star. Just wish we could remove that instant stress button, she'd be a lot happier too :)
I felt tired sore and grumpy Sunday, and veered between thinking 'ok, we're kind of half way there' and ' I don't know how much more I can take'. I was deflated, and nearly defeated, and I suppose just being so exhausted didn't help. But also, I had to acknowledge how traumatic last week was. A lot of things happened, physically and emotionally and mentally. It WAS good that I cried so much Tuesday and Wednesday, after all, it's good to be strong, but if you don't release stuff, you can't gather more strength for the next stint................ I have a lot of amazing support, messages and emails and visits full of love, and it is tremendously useful :-)
I am feeling a lot more like myself today - i slept from 8.30am - 12.30 again ... as I said, isn't sleep wonderful...?
Anyway, where were we? Ah yes, the bone marrow biopsy day. I left the last blog, then as I was about to tuck into bed, felt sick; it seems maybe a dodgy sandwich ma have set me off, but I filled a bedpan (remember they left me a stack to measure my wee?) with a days worth of vomit. Haven't felt right since! Anyway, Thursday had a couple of visitors, with more books! :) Also had to lie on one side as I was indeed feeling as Sandra the nurse had described.. as though I'd been kicked like a horse!
Also wanted to share all my experiences with my mother but knew it would add to tension and had to wait. More cwtchs from Deri Thursday evening! :) (Just remembered - Mum also got her bouquet last weekend, Pam helped me sort it out.)
Friday was a quiet day so I slept, which was fab. Didn't eat much as the hospital food seemed to get worse this time in, plus feeling nauseous anyway.
Megz and her b/f turned up again Friday, with tales of tense atmospheres. I began to think how I could split up the week next time so my mum and stepdad don't need to have the kids all week, because it just knackers them out! Mum, Bry & Deri turned up as well, looking tired! Ok, shall we go over the pro's and cons of being a single parent again now??
Came home Saturday, feeling ok but queasy. Bryan tried to rant about the kids' behaviour but I soon shut him up - wtf?? Timing dear man, timing!! Proves how overtired they were, how my mum's stress can impact on him etc, otherwise he wouldn't have tried ranting as I'm hanging out of his car window. Plus, teens ARE often moody or grunt at you, and 7 yr olds are hard work , PLUS, maybe my 3 girls were stressed too and being a bit gruff or hyper occasionally is probably expected, no?
So, sat down with a cuppa, all kiddies out, and told mum and Bryan everything. So that's out of the way. Told Bryan the holiday in May may not be able to happen due to SCT (stem cell transplant, look at me with my abbreviations), or perhaps swap names or something. Mum wondered of B and D would still want to go without me. I have reservations - 1) B would prob go if M there too as they could hang out etc, but B won't want to always do stuff with D when D doesn't want nan to do it etc.
2) if B, god forbid, acts like a teenager whilst being a teenager, or Deri gets a bit full on, mum and Bry can get stressed and then there will be rows and recriminations. 3) if D and B DO play up unnecessarily, it will spoil nan and bry's enjoyment! 4) if I'm there I can smooth things over/ humour folk, or take my kids off and have a word if needed without needing to stress mum out etc.
Maybe they should take mum's sister and hubby and just lose the money for Deri, and my kids can go somewhere later in year, plus of we take Deri to Tenby one sunny weekend, she won't care where in the world the beach is!
Mum stayed here Sat night and cooked a lovely Sunday lunch, then headed off about 4. Monday I went back to sleep after D went to school, mum came over with a pan of bolognese for us to warm up later for dinner, and a nice fresh salad with prawns for lunch with fresh bread rolls. She is a star. Just wish we could remove that instant stress button, she'd be a lot happier too :)
I felt tired sore and grumpy Sunday, and veered between thinking 'ok, we're kind of half way there' and ' I don't know how much more I can take'. I was deflated, and nearly defeated, and I suppose just being so exhausted didn't help. But also, I had to acknowledge how traumatic last week was. A lot of things happened, physically and emotionally and mentally. It WAS good that I cried so much Tuesday and Wednesday, after all, it's good to be strong, but if you don't release stuff, you can't gather more strength for the next stint................ I have a lot of amazing support, messages and emails and visits full of love, and it is tremendously useful :-)
I am feeling a lot more like myself today - i slept from 8.30am - 12.30 again ... as I said, isn't sleep wonderful...?
Wednesday 7 December 2011
3 days in. 1 more little bombshell
Arrived Mon am with no room for me - was put in assessment room on a spare bed then given the rituximab, told to watch out for any possible side-effects which can happen first time. Quizzed Jodie on what name my lymphoma has now. T cell rich diffuse B cell. Not that common but responds well to treatment. Then BAm told I'd need to give a bone marrow sample in next day or so. ?!?!?!?!?! Nice. Well an hour later, my throat became instantly dry, scratchy and closing up. Ah that'll be my side effect then. Jodie turned off drip for half hour. Throat opened up. Drip on again. Cancer sucks I thought to myself!
At 3pm told I'd have to wait til next day for side ward so onto a 6 bed ward for the night with Utter Loons: strokes/dimentia etc. I turned nursy, finding slippers and stopping Ellen trying to sleep with a pillow over her face. By 2am they had stopped shouting or yelling or farting, and I could slumber.
7.30am next day Deri is on phone:upset I'm not at home & refusing to eat breakfast. I reassure her and gee her up and get her to eat. Get off phone and crumple. It's all too much but I can just about hold it together if my kids are ok. Natalie the lovely nurse closes curtains round my bed, cwtchs me and I have a good sob. I imagine having a punch bag like boxers have and we laugh but not before I nearly have HER crying!!
11am.... Side ward found, huzzah! Same room as before! Huzzah twice for own loo, a door I can shut people out if I wish, and quietness! G visits after lunch-bless her bringing choklit and mango! Deri n mum n bry turn up at 7! Yay! Much cwtching :-))
Today, 07/12 - whisked off at 9am for bone marrow thing. 3 attempts: OUCH. Then " oh you have dense bone, we need longer needle".
Oh great. Nurse says only when you get a feeling like toothache down your thigh for 30 seconds has it worked. Immense pressure and wiggling and pillow gripping then ow, toothache in leg. Thank fuck, I think, it's done. " Ok stay there whilst we get a bit of bone". I beg your fucking pardon? A feeling like a corkscrew drilling for oil, me bursting into tears, and - it's done. Fucking pissflapping bastard bollocks!!!!!!!!!!!!!!!!!!!!!!!
Then up onto ward again and plugged into chemo and 'don't get dressing wet for 48 hours' and as I wheel into room, yay for G and LM are waiting for me!!! G brought books and more mango then has to go as off to her kids school play. LM has whittled/carved me a little deep wooden spoon for when I run out!!! :-)) AND a little mouse made of hugs :-)). How special do I feel?! And coffee and brownie and tangerines! Bloody hell I have amazing friends!!!!!
Deri n bry visit at 4 :-D cwtchs yay!!!
K visits in eve with cwtchs and delicious gifts (I won't get out of door on Sat!) them Broni n Megz n Ben!!! Whoop!
Now exhausted and going to flop out on pillows!
Love you all! Xxxxxxx
At 3pm told I'd have to wait til next day for side ward so onto a 6 bed ward for the night with Utter Loons: strokes/dimentia etc. I turned nursy, finding slippers and stopping Ellen trying to sleep with a pillow over her face. By 2am they had stopped shouting or yelling or farting, and I could slumber.
7.30am next day Deri is on phone:upset I'm not at home & refusing to eat breakfast. I reassure her and gee her up and get her to eat. Get off phone and crumple. It's all too much but I can just about hold it together if my kids are ok. Natalie the lovely nurse closes curtains round my bed, cwtchs me and I have a good sob. I imagine having a punch bag like boxers have and we laugh but not before I nearly have HER crying!!
11am.... Side ward found, huzzah! Same room as before! Huzzah twice for own loo, a door I can shut people out if I wish, and quietness! G visits after lunch-bless her bringing choklit and mango! Deri n mum n bry turn up at 7! Yay! Much cwtching :-))
Today, 07/12 - whisked off at 9am for bone marrow thing. 3 attempts: OUCH. Then " oh you have dense bone, we need longer needle".
Oh great. Nurse says only when you get a feeling like toothache down your thigh for 30 seconds has it worked. Immense pressure and wiggling and pillow gripping then ow, toothache in leg. Thank fuck, I think, it's done. " Ok stay there whilst we get a bit of bone". I beg your fucking pardon? A feeling like a corkscrew drilling for oil, me bursting into tears, and - it's done. Fucking pissflapping bastard bollocks!!!!!!!!!!!!!!!!!!!!!!!
Then up onto ward again and plugged into chemo and 'don't get dressing wet for 48 hours' and as I wheel into room, yay for G and LM are waiting for me!!! G brought books and more mango then has to go as off to her kids school play. LM has whittled/carved me a little deep wooden spoon for when I run out!!! :-)) AND a little mouse made of hugs :-)). How special do I feel?! And coffee and brownie and tangerines! Bloody hell I have amazing friends!!!!!
Deri n bry visit at 4 :-D cwtchs yay!!!
K visits in eve with cwtchs and delicious gifts (I won't get out of door on Sat!) them Broni n Megz n Ben!!! Whoop!
Now exhausted and going to flop out on pillows!
Love you all! Xxxxxxx
Friday 2 December 2011
Went in to get 'clerked' for Monday, ended up with biopsy results
Evening folks.
I don't know what the stats are for misdiagnosis, but apparently I DON'T have Hodgkins, I have NON Hodgkins (diffuse T cell blah blah).
So I will have 6 - 8 treatments with this new bag, which isn't strictly chemo, it an anti-body that begins with R. And 3 goes at IGEV, with next week being the 2nd. So I get 'R' this Monday, then the following Wed when I'm home (pop in to ward for morning) then again on 21st, then a week off for xmas ... also will have dates set soon for stem cell extraction.
I feel a bit gutted, as I was just getting my head around have HL! Which may sound stupid, but that's how it is ...
I didn't ask if much difference in prognosis, just went off to get the forms filled in ready for going in. I don't need to go in on Sunday night as I don't have a ''bulky mass'' on my neck this time, so can just turn up 9am on Monday.
I've told my mother what the schedule is but not about change in diagnosis coz I can't deal with her high level anxiety. I just had to chill her out anyway as my 13 yr old was trying to sneak off to stay with her girl friend at a boy's house (differing stories let them down) and I tried joking about teens and my mum turned it into a scary event all about boys and men planning something 'dreadful'. Fucks sake, teens do this type of thing, ie: sneaking, and pulling a fast one. Boys may indeed try it on, but the way she went on she made it sound like a paedophile ring!
Anyway. My 13 yr old has been delivered to her friend's house where her mum is keeping them in!
And I may open the vodka.
That is all xx
I don't know what the stats are for misdiagnosis, but apparently I DON'T have Hodgkins, I have NON Hodgkins (diffuse T cell blah blah).
So I will have 6 - 8 treatments with this new bag, which isn't strictly chemo, it an anti-body that begins with R. And 3 goes at IGEV, with next week being the 2nd. So I get 'R' this Monday, then the following Wed when I'm home (pop in to ward for morning) then again on 21st, then a week off for xmas ... also will have dates set soon for stem cell extraction.
I feel a bit gutted, as I was just getting my head around have HL! Which may sound stupid, but that's how it is ...
I didn't ask if much difference in prognosis, just went off to get the forms filled in ready for going in. I don't need to go in on Sunday night as I don't have a ''bulky mass'' on my neck this time, so can just turn up 9am on Monday.
I've told my mother what the schedule is but not about change in diagnosis coz I can't deal with her high level anxiety. I just had to chill her out anyway as my 13 yr old was trying to sneak off to stay with her girl friend at a boy's house (differing stories let them down) and I tried joking about teens and my mum turned it into a scary event all about boys and men planning something 'dreadful'. Fucks sake, teens do this type of thing, ie: sneaking, and pulling a fast one. Boys may indeed try it on, but the way she went on she made it sound like a paedophile ring!
Anyway. My 13 yr old has been delivered to her friend's house where her mum is keeping them in!
And I may open the vodka.
That is all xx
Thursday 1 December 2011
SURREAL! But also, perhaps a touch of genius?!
Well. I was given another reflexology appointment for today - and offered to go along all day to take part in their Thursday coffee morning and craft session! Hmmm. Well, they looked at me so expectantly and all smiley and I am getting free therapies, so I did it!
Sat on a red minibus picking up very elderly people, made crafts with more people, some of them slightly less elderly - actually met Sheila, a very chirpy cheeky and mumsy Irish lady who made me laugh! One of the craft ladies leading the session was my eldest daughter's boyfriends aunt?!?
I did make some very funky things with felt and blanket stitching and wished I had time to do this instead of working - oh, hang on..............................
Then we had our free lunch (very care home - sorry!) by which time I was morphing from a patient to a carer HAHA! Then some delightful reflexology and bantered with Loud Anne (another patient) who wants to be Boss HAHAHA! back on the minibus, and got home feeling very relaxed, but VERY weird!!!!!!!!!!
Ok, FIRSTLY - I had a plan, courtesy of Nancy, to talk to Deri to get her to view the tubes as USEFUL and friendly not as something mummy has to ''endure'' - and the counsellor agreed with my plan - so (and here is where my writing and/or O level Drama came in useful) , I decided to talk to her on the way to school =
"Mummy is going to see the doctor later for a checkup. I was very happy last time I went." 'why?' " Because I was having medicine and I thought about how lucky I was to have my tubes" look of bafflement from Deri. 'whys that mummy?' "Well, the man next to me had to have 3 big needles injected in him for his medicine, which took ages and hurt him a bit, and he asked why I was ready earlier than him. So I told him about my tubes and how they make the medicine go in faster and I don't need to have needles every time I go in. He said he was quite jealous and was going to ask his doctor if he could have tubes. And the lady opposite me said her tubes were useful and it was only a bit annoying when you were in the bath but she's glad she has them so we were both happy together and the man thinks he should get some too." Thoughtful expression from Deri.
Ahem.
So I let that filter down through the day. During dinner this evening, at which mum and stepdad were here (and I had explained to them my hopefully Cunning Plan), Deri said to me - 'mum, have you told nan about (stage whisper) the man with the three needles?' So of course I had to re-tell my story to my mother, who was fab and said 'Oh Yes, I expect he was very jealous and maybe next time you'll see him he'll have tubes too' - but it seems the Cunning Plan is already working?
Let's see what happens over the next couple of night re:anxiety...?
Sat on a red minibus picking up very elderly people, made crafts with more people, some of them slightly less elderly - actually met Sheila, a very chirpy cheeky and mumsy Irish lady who made me laugh! One of the craft ladies leading the session was my eldest daughter's boyfriends aunt?!?
I did make some very funky things with felt and blanket stitching and wished I had time to do this instead of working - oh, hang on..............................
Then we had our free lunch (very care home - sorry!) by which time I was morphing from a patient to a carer HAHA! Then some delightful reflexology and bantered with Loud Anne (another patient) who wants to be Boss HAHAHA! back on the minibus, and got home feeling very relaxed, but VERY weird!!!!!!!!!!
Ok, FIRSTLY - I had a plan, courtesy of Nancy, to talk to Deri to get her to view the tubes as USEFUL and friendly not as something mummy has to ''endure'' - and the counsellor agreed with my plan - so (and here is where my writing and/or O level Drama came in useful) , I decided to talk to her on the way to school =
"Mummy is going to see the doctor later for a checkup. I was very happy last time I went." 'why?' " Because I was having medicine and I thought about how lucky I was to have my tubes" look of bafflement from Deri. 'whys that mummy?' "Well, the man next to me had to have 3 big needles injected in him for his medicine, which took ages and hurt him a bit, and he asked why I was ready earlier than him. So I told him about my tubes and how they make the medicine go in faster and I don't need to have needles every time I go in. He said he was quite jealous and was going to ask his doctor if he could have tubes. And the lady opposite me said her tubes were useful and it was only a bit annoying when you were in the bath but she's glad she has them so we were both happy together and the man thinks he should get some too." Thoughtful expression from Deri.
Ahem.
So I let that filter down through the day. During dinner this evening, at which mum and stepdad were here (and I had explained to them my hopefully Cunning Plan), Deri said to me - 'mum, have you told nan about (stage whisper) the man with the three needles?' So of course I had to re-tell my story to my mother, who was fab and said 'Oh Yes, I expect he was very jealous and maybe next time you'll see him he'll have tubes too' - but it seems the Cunning Plan is already working?
Let's see what happens over the next couple of night re:anxiety...?
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