26.12.15
Happy boxing day.
Ive been out this afternoon to Chloes family for a festive feast. It was lovely. Good food, good company and cuddles with a 2 week old baby who doesn't do the crying thing. Then home to Chris's for a festive Peter Pan rendition starring some children who couldn't act for toffee and some really unusual things, like nurses standing around on the ward doing nothing, and 'Wendy' arresting on the theatre table and the doctors taking forever to start to resuscitate her. She had no wound to show for the op and her mother expected her to carry her own bag when she left the hospital and gave her the biggest, tightest hug which had got to hurt after her open heart surgery. Paloma Faith was Tinkerbell, which was really odd.
I feel i was cheated. Boxing day evening telly should be better than that.
Do you know what i love? I love going to bed at night. The evening is usually spent on the sofa in front of the TV with my laptop and my dogs, and if its christmas, possibly a little bit of chocolate, or even a bigger bit of chocolate.
At 10 - 10.30 it has been known for me to switch off the box, give the dogs a little treat (not chocolate), and head upstairs for a bit of 'me' time.
TV, laptop, and no odour of dogs having had a little turkey!
I put on whatever i want to watch (which i can do downstairs), and i fall asleep!
Every flipping night!
I wake up having missed what i was watching, i tell myself off, turn off the TV and the light, roll over, hitch the quilt up under my chin, pop my legs out of the bed at the bottom, and i wait.
Nothing except the whirring sound of my head going round.
Sometimes, i 'rewind' what id missed to watch it again, and i fall asleep again!
TV off, light off, roll over, quilt etc, and still nothing.
Thats what I'm doing now!
Monday 28 December 2015
Thursday 24 December 2015
22.12.15
Ive had a funny tummy all weekend. The GP thinks i picked something up from hospital - nice.
At least i may lose some weight!
No, not a pound.
So, days pass by and i wait, and i wait.
I should hear soon, shouldn't I?
This is like waiting for Christmas!
So this morning the phone rang. It was my GP who id had a phone appointment with yesterday about my 'superbug experience', if thats what it is. Bliddy feels like it! She ordered a specimen! Thats gonna be fun getting that. I just asked if my results were in and she wasn't even aware i had an op cos i haven't delivered my hospital letter at the surgery yet!
So i explain, and i tell her of the treatment thats been discussed etc. She's a lovely lady. Im very lucky to have 2 very nice GP's. If we could just stop the locums who visit and give the oddest advice, like, 'just stop your heart tabs if you think they give you a bad back!' or, 'you are itchy in your axilla area cos you didn't dry yourself properly!' Little gems of wisdom.
Anyway, i digress. So no, she didn't have my results on monday.
But here she is phoning me tuesday morning???
'Im ringing to make sure you have a wonderful Christmas.'
Puzzled!!!
'I have your histology results!'
My mouth went dry and pulse quickened. Did she mean the specimen that i delivered that morning? Already?
'The 2 lymph glands removed were examined and seen to be reactive lymph nodes, no malignancy found......'
I can't completely remember my response.... but there were tears, there was an 'i don't believe it', a 'how', sheer disbelief, ecstasy (not the drug of course), realisation, maybe a little dance. 'How did that happen, is there any doubt?' She can't answer those questions, she's just reading the report.
'You have a wonderful Christmas now,' she said.
She phoned me specially to ensure i had a good festive season, how amazing is that?
I told her she's an absolute star and virtually told her i loved her!!
So i got off the phone and sobbed. I rang the boys, one of them sobbed, i won't say which one so he doesn't lose his street cred! I told about 4 people on FB, 2 in particular rang me in tears straight away. One was on her mini honeymoon!!! I telephoned a few people.
The problem i had with broadcasting it is this......
The GP 'read' the report. Dr Jack does more than 'read' it. He analyses it. I know he will look deeper, so i did just that.
'Is it because the biopsy wasn't good enough?'
Thats a common problem with diagnosing HL or so it seems.
'Was the surgeon right when he said, 'When the gland site has already been operated on the gland can be full of lymph fluid the second time round and not give a good result''?
So I've decided to wait until I've spoken to Dr Jack. How awful would it be to be singing and dancing for him to say, 'thats not necessarily a good result. We need to Watch and Wait.'
No doubt i will be watched and waited on, a further appointment with more bloods and maybe another PET scan.
But i am cautiously cock a hoop!
The last few months have been epic.
Cancer is a lonely place, despite family and the lovely comments I've received on my 'Who's the Boss' page on FB, and you know who you are. I thank you for the love I've been shown. Ive spent hours going over and over. I think i coped well. There was no depression or tears, just acceptance based on my symptoms and Dr Jacks experience. Its nice to be wrong now and again!
I can liken it to death row. Ive sat here in the confines of my prison (my head), just thinking about what I've done! Ive been fed slop, but thats just my cooking, I've had a few battles with people who told me i was being negative. My response, 'no I'm being realistic,' and I'm happy with the way i was. It was my self protection. To keep being told by people, 'i just know you'll be fine,' which was based on their wish for me to be fine rather than any statistics or experiences. Well, they were right, although i use that term loosely, i do however appreciate the reason for them saying it. For the ones who've run with me and believed me.....Losers!
Haha, i appreciate your belief in me, my body and my intelligence. You'll never believe me again tho!
Anyway, death row....
I have been taken from my cell, walked to the firing squad, a bag has been placed over my head (people have suggested that before, funnily!) i have stared my executioner in the eye, which is difficult when you have a bag over your head, and i have waited for the 'take aim...........' and at almost the last minute, the 'guvnor' has stepped in with a full pardon.
So this is what i wrote yesterday! I waited to speak to Dr Jack so i didn't tell everyone, 'I'm cured', followed by, 'no I'm not!'
Today i found out why that was a good idea.
Dr Jack rang and said the glands were very small, less than a centimetre and so not likely to be affected yet, if i do indeed have HL. He says were not out of the woods yet. He will see me in the near future and re scan and check bloods again. So I'm back on track for HL to be back and to have a stem cell transplant.
Funny thing is, the GP rang me to make my Christmas, if she hadn't rung me, i would still have been accepting/believing it was back and when he gave me the news this evening I wouldn't have been affected by it.
So im gonna crack open the Prosecco and get a little tiddly.
Merry Christmas everyone.
Ive had a funny tummy all weekend. The GP thinks i picked something up from hospital - nice.
At least i may lose some weight!
No, not a pound.
So, days pass by and i wait, and i wait.
I should hear soon, shouldn't I?
This is like waiting for Christmas!
So this morning the phone rang. It was my GP who id had a phone appointment with yesterday about my 'superbug experience', if thats what it is. Bliddy feels like it! She ordered a specimen! Thats gonna be fun getting that. I just asked if my results were in and she wasn't even aware i had an op cos i haven't delivered my hospital letter at the surgery yet!
So i explain, and i tell her of the treatment thats been discussed etc. She's a lovely lady. Im very lucky to have 2 very nice GP's. If we could just stop the locums who visit and give the oddest advice, like, 'just stop your heart tabs if you think they give you a bad back!' or, 'you are itchy in your axilla area cos you didn't dry yourself properly!' Little gems of wisdom.
Anyway, i digress. So no, she didn't have my results on monday.
But here she is phoning me tuesday morning???
'Im ringing to make sure you have a wonderful Christmas.'
Puzzled!!!
'I have your histology results!'
My mouth went dry and pulse quickened. Did she mean the specimen that i delivered that morning? Already?
'The 2 lymph glands removed were examined and seen to be reactive lymph nodes, no malignancy found......'
I can't completely remember my response.... but there were tears, there was an 'i don't believe it', a 'how', sheer disbelief, ecstasy (not the drug of course), realisation, maybe a little dance. 'How did that happen, is there any doubt?' She can't answer those questions, she's just reading the report.
'You have a wonderful Christmas now,' she said.
She phoned me specially to ensure i had a good festive season, how amazing is that?
I told her she's an absolute star and virtually told her i loved her!!
So i got off the phone and sobbed. I rang the boys, one of them sobbed, i won't say which one so he doesn't lose his street cred! I told about 4 people on FB, 2 in particular rang me in tears straight away. One was on her mini honeymoon!!! I telephoned a few people.
The problem i had with broadcasting it is this......
The GP 'read' the report. Dr Jack does more than 'read' it. He analyses it. I know he will look deeper, so i did just that.
'Is it because the biopsy wasn't good enough?'
Thats a common problem with diagnosing HL or so it seems.
'Was the surgeon right when he said, 'When the gland site has already been operated on the gland can be full of lymph fluid the second time round and not give a good result''?
So I've decided to wait until I've spoken to Dr Jack. How awful would it be to be singing and dancing for him to say, 'thats not necessarily a good result. We need to Watch and Wait.'
No doubt i will be watched and waited on, a further appointment with more bloods and maybe another PET scan.
But i am cautiously cock a hoop!
The last few months have been epic.
Cancer is a lonely place, despite family and the lovely comments I've received on my 'Who's the Boss' page on FB, and you know who you are. I thank you for the love I've been shown. Ive spent hours going over and over. I think i coped well. There was no depression or tears, just acceptance based on my symptoms and Dr Jacks experience. Its nice to be wrong now and again!
I can liken it to death row. Ive sat here in the confines of my prison (my head), just thinking about what I've done! Ive been fed slop, but thats just my cooking, I've had a few battles with people who told me i was being negative. My response, 'no I'm being realistic,' and I'm happy with the way i was. It was my self protection. To keep being told by people, 'i just know you'll be fine,' which was based on their wish for me to be fine rather than any statistics or experiences. Well, they were right, although i use that term loosely, i do however appreciate the reason for them saying it. For the ones who've run with me and believed me.....Losers!
Haha, i appreciate your belief in me, my body and my intelligence. You'll never believe me again tho!
Anyway, death row....
I have been taken from my cell, walked to the firing squad, a bag has been placed over my head (people have suggested that before, funnily!) i have stared my executioner in the eye, which is difficult when you have a bag over your head, and i have waited for the 'take aim...........' and at almost the last minute, the 'guvnor' has stepped in with a full pardon.
So this is what i wrote yesterday! I waited to speak to Dr Jack so i didn't tell everyone, 'I'm cured', followed by, 'no I'm not!'
Today i found out why that was a good idea.
Dr Jack rang and said the glands were very small, less than a centimetre and so not likely to be affected yet, if i do indeed have HL. He says were not out of the woods yet. He will see me in the near future and re scan and check bloods again. So I'm back on track for HL to be back and to have a stem cell transplant.
Funny thing is, the GP rang me to make my Christmas, if she hadn't rung me, i would still have been accepting/believing it was back and when he gave me the news this evening I wouldn't have been affected by it.
So im gonna crack open the Prosecco and get a little tiddly.
Merry Christmas everyone.
Thursday 17 December 2015
15.12.15
RUSSELL WATSON. 14.12.15 THE KINGS THEATRE, SOUTHSEA.
Oh what a day.!
The girls, Kelly, Kim and Fay came to me and we drove to collect Caroline (or Frank, as i call her). We drove to The Kings Theatre in Southsea and found a spot to park in right outside the theatre.
We entered the theatre via the stage door and the magic began.
We all congregated in the dressing rooms. Becky, Mark, James, Sara, Lesley, and so many more friends. Mirrors surrounded by light bulbs, intercoms to hear your call time, and the smell of sweat and tears!
We were arranged by Jenny (choir leader extraordinaire) in our harmonies and height order ready for our positions on stage, and then headed off, row after row, through the rabbit warren of corridors and stairs to the stage.
Oh my goodness, the theatre was beautiful.
We took our seats ready for rehearsal.
RUSSELL WATSON. 14.12.15 THE KINGS THEATRE, SOUTHSEA.
Oh what a day.!
The girls, Kelly, Kim and Fay came to me and we drove to collect Caroline (or Frank, as i call her). We drove to The Kings Theatre in Southsea and found a spot to park in right outside the theatre.
We entered the theatre via the stage door and the magic began.
We all congregated in the dressing rooms. Becky, Mark, James, Sara, Lesley, and so many more friends. Mirrors surrounded by light bulbs, intercoms to hear your call time, and the smell of sweat and tears!
We were arranged by Jenny (choir leader extraordinaire) in our harmonies and height order ready for our positions on stage, and then headed off, row after row, through the rabbit warren of corridors and stairs to the stage.
Oh my goodness, the theatre was beautiful.
We took our seats ready for rehearsal.
We met Ed Rugman, Russells musical director. He was lovely. Friendly, warm and very funny. He went through the songs and what was expected of us.
We rehearsed a few songs and i felt wonderful. I think we all felt wonderful. Then he mentioned singing a few christmassy songs. This was the last concert of the tour and getting nearer to christmas thought it would be nice. Luckily, most of the christmas ones were part of a 'Christmas Medley' that we sang last year in a concert so we knew the words and harmonies.
When singing in a choir you have to keep your eyes on the conductor, Jenny, and also Ed to a degree.
We started singing White Christmas and suddenly i heard the voice of a man booming along with us. It was Russell, still in his jacket and thick scarf, having just arrived.
His voice was exquisite.
We sang through a few numbers with him and he told us we were, out of the 85 choirs he'd sung with, the best. Our harmonies were excellent. And Ed agreed.
Russell was lovely. Again, warm and friendly, and not what we expected. We thought he may be a bit of a diva. But no, he was lovely.
I can't put into words how amazing the day was up until now.
We went back to our dressing rooms for some sustenance and silliness.
We had a couple of hours until we were on stage for the second half.
Then the time came to get back into our positions ready for our performance.
We took our places whilst the audience watched, and we sat and waited for Russell to join us.
The audience loved him. He came on stage and the roars from the audience were amazing. So exciting. Of course they could have been cheering for us!
He started the second half of his set and we waited for our cue to stand.
Funiculi funicula.
I cannot tell you the emotions i went through.
Toreador, Va Pensiero, unimaginable excitement.
He sang other songs that we joined in with in a fun way. There was lots of laughter. He went out into the audience and shook hands and spoke to people.
The 'strings' had their own session, as did the guitarist, and Ed played the piano.
We did the christmassy songs, and the crowd continued to cheer and clap, obviously having a great time, as were the choir.
He even took a selfie of us, and one of the audience.
And this is what the audience saw.
Then the final song, You Raise Me Up. I was so sad when it ended. Russell left the stage for the 4th or 5th time after loud encores, and giving us the thumbs up and thanking us, and we were then congratulated by Ed, and our Jenny.
Back to the dressing room and time to make our weary way home.
This blog does nothing to tell you how immense the experience was, for all of us, including Jenny. She was amazing. Our last performance with a lovely, talented lady who is 'going places' with her band The Lounge Kittens.
Do you know, even writing this now i feel so emotional i could cry. It was one of the best experiences of my life. Singing, friends and excitement.
Tuesday 15 December 2015
15.12.15
And a nice almost symmetrical date for my op!
Yesterday was Russell Watson day and i will be blogging about it, but i have to do op day now.
I was NBM (nil by mouth) from midnight last night and managed to get back home from RW at 11.55pm. Just in time to eat something before i passed out! Grapes and a piece of stollen!
To bed, and hoping for a good nights sleep after the hectic day id just had.
Yes again i was wrong, and i was denied.
Eventually dropped orf but reawoke (is that a word?) at 5.30am. Medication taken with water allowed until 6am.
Woke Sam to take me to the hospital at 6.30 after a wash and brush up.
Got in his car and he had no petrol!
So we went in mine, me driving, and he returning it, probably far too fast and taking bends on 2 wheels!
Got to the waiting room on the day ward to find a whole gaggle of inmates waiting for some medical intervention.
Time for people watching.
One deaf man accompanied by 2 very talkative women (a bonus i'd say!).
Two young girls examining their nails in great depth with talk of red varnish being difficult to remove. You never get young men talking about their nails do you?
Someone absolutely reaked of garlic, which when you're starving is not helpful!
A girl in a long leather coat and a large floppy hat, i think she thought she was at Cannes film festival. I don't think she realised she had to roll that nice coat of hers up and shove it in a locker along with her oversized floppy hat.
Then the nurse walked towards the waiting room, clip board in hand... slowly, very slowly, and all us cannon fodder all watched and waited for her to call our name.
'JILL FIRMIN'
Result! First on the list. Some may say not good cos he'll have cold hands, others say, he's fresh and wide awake, and not bored with yet another lymph gland or carpal tunnel to sort.
I was taken to the changing cubicle and as the nurse gave me instructions my friend Jenny (Staff nurse on the ward) came past and gave me a hug and greeted me, etc, so i didn't take in what the nurse was saying.
But i got the gist. Took my clothes off and put the gown on, bent over to put my shoes on and had a worrying thought.
'Did i shut the changing cubicle door!!!!!'
If i hadn't, i would have given everyone a nasty shock.
'Anti-emetics all round!'
Luckily for everyone, i had.
I was taken to the waiting bay....to wait.
Admitted by Iris, a lovely lady.
Seen by the anaesthetist, who was quite tasty, but about 12 years old.
Seen by anaesthetists boss who was also quite tasty, and more my age group.
Seen by the surgeon, also tasty, who groped my lymph gland where Fergus (Dr Jack) once groped, also tasty!
All this tastiness and I'm NBM!
Back to the waiting bay and within one Sudoku, i was gathered up and taken to theatre.
I was layeth down and reassured i would not be getting a whiff of the knock out gas, just some oxygen. I remember as a child being knocked out with Halothane and i was so sick. Even the thought of it makes me feel sick.
So i was cannulated (i thought id made that word up, but its in the dictionary!), maybe cannularised (oh thats in the dictionary too), and i waited for my cocktail.
In the meantime, one of the sisters asked if 'Ann the agency nurse' was in the operating room, and could she come out, to which my resident nurse replied, 'she can't, she's scrubbed up'
'She can't be scrub, she's not had her induction.'
The silence was deafening!
The ODA (operating department assistant), who was entertaining me, and was very tasty, but very married, looked at my anxious face apologetically and reassuringly and left the room forthwith, to have a word!
To be fair, no induction didn't mean i was in any danger. She was a qualified nurse who was 'au fait' with everything 'scrub'.
Its like having an induction at the gym, we all know how to ride an exercise bike and if we don't have our induction, we're not gonna run anyone over!
The discussion of where the ODA was gonna take his wife on holiday continued until the anaesthetist delivered my cocktail of drugs.
It was a quite jolly and humorous. I was advised the first fluid into my cannula would feel like my drink of choice, Prosecco, but he was obviously unaware of me drinking it from a schooner rather than a flute! So a little more was administered to which i replied, 'Oh yes, i remember that feeling' and then i was gone!
I awoke 10 seconds later (it felt like 10 seconds anyway) to my name being called, i hate that!
I was returned to my ward and was given some water, shortly followed by coffee and toast, and then advised to ring for my chauffeur!
And i must say, ALL the staff that i came in contact with were nothing more than helpful, reassuring and friendly. My whole experience today has been fantastic, which after having been a private patient, i was not expecting.
So i was packed off home, thank you to Phil who was my knight in shining armour, after chatting with Staff Nurse Jenny before our departure.
Home to the lovely Chloe who is staying with me this evening to look after me. I have a little list of a few necessities whilst she's here:-
Clean the bathrooms, both of them.
Ironing
A bit of gardening (i have a brolly she can borrow)
Cook my dinner
Rub my feet, and
Sing me a song
She's been a darling, and dinner was gorge!
Im sure theres so much more i could waffle on about, but to be fair, I'm losing the will to live with all this typing. So I'm gonna go now. Hurrah, i hear you shout.
But before i go, photo opportunity!
And 'Winner winner, chicken dinner' by Chloe!
And a nice almost symmetrical date for my op!
Yesterday was Russell Watson day and i will be blogging about it, but i have to do op day now.
I was NBM (nil by mouth) from midnight last night and managed to get back home from RW at 11.55pm. Just in time to eat something before i passed out! Grapes and a piece of stollen!
To bed, and hoping for a good nights sleep after the hectic day id just had.
Yes again i was wrong, and i was denied.
Eventually dropped orf but reawoke (is that a word?) at 5.30am. Medication taken with water allowed until 6am.
Woke Sam to take me to the hospital at 6.30 after a wash and brush up.
Got in his car and he had no petrol!
So we went in mine, me driving, and he returning it, probably far too fast and taking bends on 2 wheels!
Got to the waiting room on the day ward to find a whole gaggle of inmates waiting for some medical intervention.
Time for people watching.
One deaf man accompanied by 2 very talkative women (a bonus i'd say!).
Two young girls examining their nails in great depth with talk of red varnish being difficult to remove. You never get young men talking about their nails do you?
Someone absolutely reaked of garlic, which when you're starving is not helpful!
A girl in a long leather coat and a large floppy hat, i think she thought she was at Cannes film festival. I don't think she realised she had to roll that nice coat of hers up and shove it in a locker along with her oversized floppy hat.
Then the nurse walked towards the waiting room, clip board in hand... slowly, very slowly, and all us cannon fodder all watched and waited for her to call our name.
'JILL FIRMIN'
Result! First on the list. Some may say not good cos he'll have cold hands, others say, he's fresh and wide awake, and not bored with yet another lymph gland or carpal tunnel to sort.
I was taken to the changing cubicle and as the nurse gave me instructions my friend Jenny (Staff nurse on the ward) came past and gave me a hug and greeted me, etc, so i didn't take in what the nurse was saying.
But i got the gist. Took my clothes off and put the gown on, bent over to put my shoes on and had a worrying thought.
'Did i shut the changing cubicle door!!!!!'
If i hadn't, i would have given everyone a nasty shock.
'Anti-emetics all round!'
Luckily for everyone, i had.
I was taken to the waiting bay....to wait.
Admitted by Iris, a lovely lady.
Seen by the anaesthetist, who was quite tasty, but about 12 years old.
Seen by anaesthetists boss who was also quite tasty, and more my age group.
Seen by the surgeon, also tasty, who groped my lymph gland where Fergus (Dr Jack) once groped, also tasty!
All this tastiness and I'm NBM!
Back to the waiting bay and within one Sudoku, i was gathered up and taken to theatre.
I was layeth down and reassured i would not be getting a whiff of the knock out gas, just some oxygen. I remember as a child being knocked out with Halothane and i was so sick. Even the thought of it makes me feel sick.
So i was cannulated (i thought id made that word up, but its in the dictionary!), maybe cannularised (oh thats in the dictionary too), and i waited for my cocktail.
In the meantime, one of the sisters asked if 'Ann the agency nurse' was in the operating room, and could she come out, to which my resident nurse replied, 'she can't, she's scrubbed up'
'She can't be scrub, she's not had her induction.'
The silence was deafening!
The ODA (operating department assistant), who was entertaining me, and was very tasty, but very married, looked at my anxious face apologetically and reassuringly and left the room forthwith, to have a word!
To be fair, no induction didn't mean i was in any danger. She was a qualified nurse who was 'au fait' with everything 'scrub'.
Its like having an induction at the gym, we all know how to ride an exercise bike and if we don't have our induction, we're not gonna run anyone over!
The discussion of where the ODA was gonna take his wife on holiday continued until the anaesthetist delivered my cocktail of drugs.
It was a quite jolly and humorous. I was advised the first fluid into my cannula would feel like my drink of choice, Prosecco, but he was obviously unaware of me drinking it from a schooner rather than a flute! So a little more was administered to which i replied, 'Oh yes, i remember that feeling' and then i was gone!
I awoke 10 seconds later (it felt like 10 seconds anyway) to my name being called, i hate that!
I was returned to my ward and was given some water, shortly followed by coffee and toast, and then advised to ring for my chauffeur!
And i must say, ALL the staff that i came in contact with were nothing more than helpful, reassuring and friendly. My whole experience today has been fantastic, which after having been a private patient, i was not expecting.
So i was packed off home, thank you to Phil who was my knight in shining armour, after chatting with Staff Nurse Jenny before our departure.
Home to the lovely Chloe who is staying with me this evening to look after me. I have a little list of a few necessities whilst she's here:-
Clean the bathrooms, both of them.
Ironing
A bit of gardening (i have a brolly she can borrow)
Cook my dinner
Rub my feet, and
Sing me a song
She's been a darling, and dinner was gorge!
Im sure theres so much more i could waffle on about, but to be fair, I'm losing the will to live with all this typing. So I'm gonna go now. Hurrah, i hear you shout.
But before i go, photo opportunity!
Me modelling the NHS operating theatre gown, suction and oxygen not included!
13.12.15
I must say its nice to be in bed. I have my hot water bottle which will be launched across the room in a minute when i have a hot flush, and I'm hoping tonight is the night i break the cycle and don't have a 'dream'!
Last night i had a 'dream' and couldn't get back to sleep and then woke at 6.30 when my next door neighbour went off for his weekly game of golf.
6.30 on a sunday morning, every sunday morning, and i think he has a hole in his exhaust!
So tonight is the night after a busy day I'm hoping for uninterrupted sleep
And I'm sure you've noticed 'night terror' has become 'dream' in the hope of making it less negative. I have put my worries on a cloud (advice from the sleep workshop girls, or piss pots as i like to call them - peer supports!), I've breathed in a bit of blue and breathed out a bit of red, I'm relaxed and CALLMM. Fingers crossed for me.
Today was epic.
6 hours of singing.
I attended the jazz workshop with choir and the lovely Jenny Deacon. What a wonderful world, It don't mean a thing if it aint got that swing, and My Way. Very enjoyable apart from the numpties sat behind me who talked the whole time. When others were singing! When Jenny was talking! And they only stopped when they sang, and a lot of the time, that was wrong too!
But lots of lovely people there, free refreshments (tea and coffee, probably caffeinated so my lack of 'dream' expectation has just gone off on a cloud), and Jennys inimitable style always puts me in a good mood. There was a live band to play for us, and Jenny did a bit of scatting to Blue Skies which was so good, she's a clever old stick.
Then an hours worth of Russell Watson rehearsal and i must say it was sounding lovely.
Tomorrow is RW day, so also hoping for a good nights sleep!!!
Then of course, its tuesday. Operation Lymph Gland! Ive just thought up a new acronym for results day.
Removal Of Gland, Excision Results - or ROGER
Chop Out Weird And Ridiculous Deformity - COWARD
Snip Chunky And Re-enlarged Eyesores Down Yonder, Cut And Tie - SCAREDY CAT
I must say its nice to be in bed. I have my hot water bottle which will be launched across the room in a minute when i have a hot flush, and I'm hoping tonight is the night i break the cycle and don't have a 'dream'!
Last night i had a 'dream' and couldn't get back to sleep and then woke at 6.30 when my next door neighbour went off for his weekly game of golf.
6.30 on a sunday morning, every sunday morning, and i think he has a hole in his exhaust!
So tonight is the night after a busy day I'm hoping for uninterrupted sleep
And I'm sure you've noticed 'night terror' has become 'dream' in the hope of making it less negative. I have put my worries on a cloud (advice from the sleep workshop girls, or piss pots as i like to call them - peer supports!), I've breathed in a bit of blue and breathed out a bit of red, I'm relaxed and CALLMM. Fingers crossed for me.
Today was epic.
6 hours of singing.
I attended the jazz workshop with choir and the lovely Jenny Deacon. What a wonderful world, It don't mean a thing if it aint got that swing, and My Way. Very enjoyable apart from the numpties sat behind me who talked the whole time. When others were singing! When Jenny was talking! And they only stopped when they sang, and a lot of the time, that was wrong too!
But lots of lovely people there, free refreshments (tea and coffee, probably caffeinated so my lack of 'dream' expectation has just gone off on a cloud), and Jennys inimitable style always puts me in a good mood. There was a live band to play for us, and Jenny did a bit of scatting to Blue Skies which was so good, she's a clever old stick.
Then an hours worth of Russell Watson rehearsal and i must say it was sounding lovely.
Tomorrow is RW day, so also hoping for a good nights sleep!!!
Then of course, its tuesday. Operation Lymph Gland! Ive just thought up a new acronym for results day.
Removal Of Gland, Excision Results - or ROGER
Chop Out Weird And Ridiculous Deformity - COWARD
Snip Chunky And Re-enlarged Eyesores Down Yonder, Cut And Tie - SCAREDY CAT
Thursday 10 December 2015
10.12.15
Strangely, my last post started with an acronym. POOP day - post op something or other, I've forgotten already!
Well today i went for a Sleep Well, Feel Good, Relax cognitive behavioural therapy workshop with the hope it would help my sleep/night terrors.
It being a sleep workshop this is what i expected!!! And to be fair, it wasn't far from it.
So back to the acronyms. We had CBT - cognitive behavioural therapy, which is well known, SMART, REC, SLAB and a couple of others. I have no idea what it all stands for.
One of the 2 ladies running the session mentioned 'peer support' but she said it so quickly that i thought she was saying 'piss pot'. It took me a while before i got what she was saying!
Did you just try saying peer support quickly? I bet you did!
And one of the ladies i feel had an inferiority issue. I think she wanted to be the boss...but wasn't. So she took it upon herself to butt in often when the other lady was talking and she talked v e r y s l o w l y, and with hand gestures to impart her knowledge to the group. She gave personal examples of her own 'journey' all the way through. I feel i know her inside out.
About 3/4 of the way through the 2 hour workshop it was her turn to talk about relaxation and she did a small exercise with us!!!
She talked v e r y c a l m l y whilst we placed one hand on our chest and the other on our diaphragm.
'Stay relaxed, stay CALMMMM. Breath in, breath out, breath in blue, breath out red' and other spiritual directions. I felt the hysteria rising in me. Its not my thing. Im sure it helps others, but we were advised to put our worries on a cloud or let it flow away in a stream. I tend to put my worries in a mince pie and eat it! Or in a champagne flute and drink it!
We discussed many aspects of sleep. Altered thinking, physical symptoms, behaviour, emotional symptoms, diet, etc and how to try to eliminate any stresses at bedtime. There was a few ideas that would help some of the people there but not really for my issue.
We then stopped for a break.........coffee and tea...... full of caffeine! That tickled me a bit.
A couple of times, she talked about 'breathing' and how we should breath like a baby in a cot, where the tummy rises and falls, 'but some times we stop and we should continue it!' Yes, its always a good idea to continue with the breathing.
And the 2 of them would say something and laugh like hyenas in a 'mutual colleague support' way and would compliment each others ideas.
And like my phone counselling session, they would summarise by repeating what had already been said.
Both very nice though, and so willing to help all of us 'wide awakies'!
What I'm saying is, i think it was all very interesting but don't feel its helped me in any way.
TWOT (total waste of time!)
Strangely, my last post started with an acronym. POOP day - post op something or other, I've forgotten already!
Well today i went for a Sleep Well, Feel Good, Relax cognitive behavioural therapy workshop with the hope it would help my sleep/night terrors.
It being a sleep workshop this is what i expected!!! And to be fair, it wasn't far from it.
So back to the acronyms. We had CBT - cognitive behavioural therapy, which is well known, SMART, REC, SLAB and a couple of others. I have no idea what it all stands for.
One of the 2 ladies running the session mentioned 'peer support' but she said it so quickly that i thought she was saying 'piss pot'. It took me a while before i got what she was saying!
Did you just try saying peer support quickly? I bet you did!
And one of the ladies i feel had an inferiority issue. I think she wanted to be the boss...but wasn't. So she took it upon herself to butt in often when the other lady was talking and she talked v e r y s l o w l y, and with hand gestures to impart her knowledge to the group. She gave personal examples of her own 'journey' all the way through. I feel i know her inside out.
About 3/4 of the way through the 2 hour workshop it was her turn to talk about relaxation and she did a small exercise with us!!!
She talked v e r y c a l m l y whilst we placed one hand on our chest and the other on our diaphragm.
'Stay relaxed, stay CALMMMM. Breath in, breath out, breath in blue, breath out red' and other spiritual directions. I felt the hysteria rising in me. Its not my thing. Im sure it helps others, but we were advised to put our worries on a cloud or let it flow away in a stream. I tend to put my worries in a mince pie and eat it! Or in a champagne flute and drink it!
We discussed many aspects of sleep. Altered thinking, physical symptoms, behaviour, emotional symptoms, diet, etc and how to try to eliminate any stresses at bedtime. There was a few ideas that would help some of the people there but not really for my issue.
We then stopped for a break.........coffee and tea...... full of caffeine! That tickled me a bit.
A couple of times, she talked about 'breathing' and how we should breath like a baby in a cot, where the tummy rises and falls, 'but some times we stop and we should continue it!' Yes, its always a good idea to continue with the breathing.
And the 2 of them would say something and laugh like hyenas in a 'mutual colleague support' way and would compliment each others ideas.
And like my phone counselling session, they would summarise by repeating what had already been said.
Both very nice though, and so willing to help all of us 'wide awakies'!
What I'm saying is, i think it was all very interesting but don't feel its helped me in any way.
TWOT (total waste of time!)
Tuesday 8 December 2015
8.12.15
Pre Op Outpatient Pleasantries, or as i like to call it Poop Day!
Actually its 'Pre op assessment day' but couldn't make an acronym with those letters!
Knowing how bad the traffic is at the moment and it being rush hour (or hours), and the parking being a nightmare around the hospital, i left in plenty of time.
Appointment at 9am so left home at 7.30. If i drove straight there it would take 20 - 30 minutes, and i thought if i get there too early i can have a coffee and play on my iPad.
I got there at 7.55, drove straight into a parking spot fairly near the hospital and the coffee shop opens at 9am!!
So i sat in the day ward waiting room from 8-9 thinking i could have had another half hour at least in bed.
Eventually saw a nice nurse who asked my life story, did my observations and measured my height and weight, which is always unnerving!
Apparently they test you for sleep apnoea nowadays!!! She asked if i snored, do i ever stop breathing for a short period of time, do i get tired easily?
How would i know, I'm usually asleep!
She said the anaesthetist may delay the op and send me for sleep studies! Somehow i don't see that happening.
She said i should have an ECG as i had heart problems during chemo. Oh no, i thought. Another department and a long wait.
How wrong was i? I was taken to another room and had a few stickers (maybe good girl stars) planted in different areas, a few cables connected and told to stay still and not talk! Now you all know how difficult that is for me.
Then she asked me a question!!!
I looked at her, confused. Should i whisper my reply? Should i blink, doing the morse code?
'Its ok, you can talk now', she said, realising what my problem was.
It had taken about 2 minutes, if that.
Well back in the day, i used to do ECGs and it was a much bigger job. Different switches had to be flicked and i looked very knowledgable and important. I think even the cleaners can do an ECG these days (tho not so good at keeping the wards clean unfortunately!).
So, 10am and i was asked to leave!
A few chores and home sweet home.
Now time to shut the eyes and test myself for sleep apnoea!
Pre Op Outpatient Pleasantries, or as i like to call it Poop Day!
Actually its 'Pre op assessment day' but couldn't make an acronym with those letters!
Knowing how bad the traffic is at the moment and it being rush hour (or hours), and the parking being a nightmare around the hospital, i left in plenty of time.
Appointment at 9am so left home at 7.30. If i drove straight there it would take 20 - 30 minutes, and i thought if i get there too early i can have a coffee and play on my iPad.
I got there at 7.55, drove straight into a parking spot fairly near the hospital and the coffee shop opens at 9am!!
So i sat in the day ward waiting room from 8-9 thinking i could have had another half hour at least in bed.
Eventually saw a nice nurse who asked my life story, did my observations and measured my height and weight, which is always unnerving!
Apparently they test you for sleep apnoea nowadays!!! She asked if i snored, do i ever stop breathing for a short period of time, do i get tired easily?
How would i know, I'm usually asleep!
She said the anaesthetist may delay the op and send me for sleep studies! Somehow i don't see that happening.
She said i should have an ECG as i had heart problems during chemo. Oh no, i thought. Another department and a long wait.
How wrong was i? I was taken to another room and had a few stickers (maybe good girl stars) planted in different areas, a few cables connected and told to stay still and not talk! Now you all know how difficult that is for me.
Then she asked me a question!!!
I looked at her, confused. Should i whisper my reply? Should i blink, doing the morse code?
'Its ok, you can talk now', she said, realising what my problem was.
It had taken about 2 minutes, if that.
Well back in the day, i used to do ECGs and it was a much bigger job. Different switches had to be flicked and i looked very knowledgable and important. I think even the cleaners can do an ECG these days (tho not so good at keeping the wards clean unfortunately!).
So, 10am and i was asked to leave!
A few chores and home sweet home.
Now time to shut the eyes and test myself for sleep apnoea!
Friday 4 December 2015
31.11.15
Another night, another terror.
Luckily they are very short lived so i don't think i'll struggle too much with tiredness, well no more than usual.
It was early morning this time. Maybe not a night terror, just one of those things.
I was dreaming about a Scottish couple who came into my house, (it wasn't any house i recognised, but just knew it was mine!) and they were asking if i did archery. Sam was there and was translating because of the broad accent. I eventually agreed i would do a charity walk and i would get sponsors.
My phone went ping.
Curiosity always gets the better of me.
It was one of my Rockie friends asking if i would like more information for Relay for Life 2016 as id shown interest at the last one!
How weird is that?
On a better note, I'm gonna put my christmas tree up today. I wasn't gonna bother as I'm at Chris's for christmas, and i couldn't be bothered to go to all the trouble, but I've been bullied into it by Lyn! Hoping she's gonna come and help me. Theres a few chocolate truffles that i can tempt her with!
Photos later! Not of the tree, of me and Lyn covered in melted chocolate, mince pies and mulled wine, glittering and shimmering from all the tinsel and sparkly bits.
I did it myself! Why share the truffles with Lyn?
Im covered in glitter - positively vejazzled! The dogs also are glittery.
We are ready for Christmas!
Another night, another terror.
Luckily they are very short lived so i don't think i'll struggle too much with tiredness, well no more than usual.
It was early morning this time. Maybe not a night terror, just one of those things.
I was dreaming about a Scottish couple who came into my house, (it wasn't any house i recognised, but just knew it was mine!) and they were asking if i did archery. Sam was there and was translating because of the broad accent. I eventually agreed i would do a charity walk and i would get sponsors.
My phone went ping.
Curiosity always gets the better of me.
It was one of my Rockie friends asking if i would like more information for Relay for Life 2016 as id shown interest at the last one!
How weird is that?
On a better note, I'm gonna put my christmas tree up today. I wasn't gonna bother as I'm at Chris's for christmas, and i couldn't be bothered to go to all the trouble, but I've been bullied into it by Lyn! Hoping she's gonna come and help me. Theres a few chocolate truffles that i can tempt her with!
Photos later! Not of the tree, of me and Lyn covered in melted chocolate, mince pies and mulled wine, glittering and shimmering from all the tinsel and sparkly bits.
I did it myself! Why share the truffles with Lyn?
Im covered in glitter - positively vejazzled! The dogs also are glittery.
We are ready for Christmas!
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