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!
Sunday 29 November 2015
30.11.15
The lovely Jenny Deacon, aka the red kitten from the Lounge Kittens, aka our choir leader, sang a set of 3 songs one of which was her cover of Lately by Stevie Wonder, the most beautiful song. She was amazing.
Its our last Rock Choir concert with her as she's leaving to become a full time kitten and the band are 'going places'! So it was all very emosh.
Sunday morning, after walking the dogs, i spent some time at a beading group. Thats not a sexual term by the way! I was making jewellery.
Followed by some chilling before the evenings festivities. Im out for dinner with a group of friends. Id better go and wash behind the ears!
A fun filled weekend.
I class friday as weekend too. I finish work on friday morning at 8am and the moment i leave for home, its the weekend! And let me tell you, 3 days seem to go as quickly as 2 days when you're having fun!
Friday was self indulgent day. I walked the dogs when i got home then i more or less did what i do best.
Nothing!
Not strictly true. I made some chocolate truffles. Gifts for Christmas, apparently.
Well I'm gonna blame the recipe for the fact that they weren't as truffles should be. They tasted ok but were too hard. I think too much chocolate was used. So they're sat on the worktop, gradually diminishing each time i walk in the kitchen.
They are definitely not up to my usual truffle standards and therefore not good enough for gifts. And now I'm all truffled out and can't be bothered to make any more (or eat any more!)
Friday evening was a relaxed affair. Curry and Prosecco, TV and laptop.
Saturday was filled with dog walking, brain training on the laptop (playing mindless games, that is), and chatting with friends, before getting spruced up ready for the pièce de résistance of the weekend - the Rock Choir concert at St Lukes Church.
A wonderful evening singing, including a duet with Steve to 'Something Inside So Strong'. 'Merry Christmas Everyone', making it very festive and a glass of mulled wine and a mincie.
A wonderful evening singing, including a duet with Steve to 'Something Inside So Strong'. 'Merry Christmas Everyone', making it very festive and a glass of mulled wine and a mincie.
Our rendition of Don't stop me now, such fun to sing. And You're the Voice, always a favourite of mine ever since we did a flash mob in Southampton high street on a saturday lunch time. Loads more songs and i must say my feet were aching - new boots!!!
A swing band were also part of the entertainment, and they played some cool tunes to bop away to which looked fab cos we (the Rockies) were sat in the choir stalls.
A swing band were also part of the entertainment, and they played some cool tunes to bop away to which looked fab cos we (the Rockies) were sat in the choir stalls.
The lovely Jenny Deacon, aka the red kitten from the Lounge Kittens, aka our choir leader, sang a set of 3 songs one of which was her cover of Lately by Stevie Wonder, the most beautiful song. She was amazing.
Its our last Rock Choir concert with her as she's leaving to become a full time kitten and the band are 'going places'! So it was all very emosh.
Sunday morning, after walking the dogs, i spent some time at a beading group. Thats not a sexual term by the way! I was making jewellery.
Followed by some chilling before the evenings festivities. Im out for dinner with a group of friends. Id better go and wash behind the ears!
30.11.15
Ive been thinking (always dangerous), whilst talking to Princess Oogag over coffee and a pastry, we discussed a bag for life. As you all know, you can't go anywhere without one these days. Its one of the most important things in our lives. If the bag is in fact, 'for life', could i have that instead of a stem cell transplant, which is also 'for life'? It was suggested by Princess Oogag, that maybe i could have a pretty sainsburys bag. But then i came up with the theory that if i wore it over my head after the transplant i would be unable to pick up any bugs of which would take me straight to a bed on ITU, so therefore a bag for life is a good thing and well worth 5p. However, there is a negative side to my theory...... i wouldn't be able to breath, also taking me straight to a bed on ITU.
Back to the drawing board!
And on the subject of Bags for Life. Because my head is like a sieve, I have a whole cupboard full of them. Only ever used once! Special offer 3p!
Quite surprisingly, I've had 3 people suggest i don't have the stem cell transplant. Their recommendations as follows:-
1. Become vegan. It doesn't feed the cancer and so the cancer doesn't grow!
2. Powders! Which powders, nobody knows. But it saved a friend who had a limb removed and the cancer disappeared. Its the power of the powders and not the amputation that did it!
3. Chemo is bad for you so don't have it. It will cause you to suffer a secondary cancer in 10-15 years. So if i don't have the chemo, i won't live 10-15 years, so i won't get a secondary. Well done Sherlock!
4. And of course, the Bag for Life, which i think is definitely a no go, unlike option 1, 2 and 3!!
Four very good ideas, but i may stick with the SCT until i have more evidence of a cure.
So another week goes by and nothings happened. In one way thats good, I'm not looking forward to my next appointment, but it doesn't take away the fact that i have to have a biopsy at some stage. Just delaying the inevitable.
And in the meantime my imagination is running riot. I am having night terrors regularly. I think every night since last monday i have had some sleep disruption of the insanity kind! The worse one following a large glass of Prosecco pre bedtime where i jumped out of bed looking for drugs and i remember, and i don't know why, i had to drink the water on my bedside table! And the weirdest one last night where i had forgotten to take my epilepsy meds, which is weird cos i don't have epilepsy!
No epilepsy, just crazyitis!
Ive been thinking (always dangerous), whilst talking to Princess Oogag over coffee and a pastry, we discussed a bag for life. As you all know, you can't go anywhere without one these days. Its one of the most important things in our lives. If the bag is in fact, 'for life', could i have that instead of a stem cell transplant, which is also 'for life'? It was suggested by Princess Oogag, that maybe i could have a pretty sainsburys bag. But then i came up with the theory that if i wore it over my head after the transplant i would be unable to pick up any bugs of which would take me straight to a bed on ITU, so therefore a bag for life is a good thing and well worth 5p. However, there is a negative side to my theory...... i wouldn't be able to breath, also taking me straight to a bed on ITU.
Back to the drawing board!
And on the subject of Bags for Life. Because my head is like a sieve, I have a whole cupboard full of them. Only ever used once! Special offer 3p!
Quite surprisingly, I've had 3 people suggest i don't have the stem cell transplant. Their recommendations as follows:-
1. Become vegan. It doesn't feed the cancer and so the cancer doesn't grow!
2. Powders! Which powders, nobody knows. But it saved a friend who had a limb removed and the cancer disappeared. Its the power of the powders and not the amputation that did it!
3. Chemo is bad for you so don't have it. It will cause you to suffer a secondary cancer in 10-15 years. So if i don't have the chemo, i won't live 10-15 years, so i won't get a secondary. Well done Sherlock!
4. And of course, the Bag for Life, which i think is definitely a no go, unlike option 1, 2 and 3!!
Four very good ideas, but i may stick with the SCT until i have more evidence of a cure.
So another week goes by and nothings happened. In one way thats good, I'm not looking forward to my next appointment, but it doesn't take away the fact that i have to have a biopsy at some stage. Just delaying the inevitable.
And in the meantime my imagination is running riot. I am having night terrors regularly. I think every night since last monday i have had some sleep disruption of the insanity kind! The worse one following a large glass of Prosecco pre bedtime where i jumped out of bed looking for drugs and i remember, and i don't know why, i had to drink the water on my bedside table! And the weirdest one last night where i had forgotten to take my epilepsy meds, which is weird cos i don't have epilepsy!
No epilepsy, just crazyitis!
Thursday 26 November 2015
25.11.15
For you ladies, do you remember having your first baby? You thought there was no way you would ever get baby bathed and dressed and fed, and yourself showered and dressed so that you could go out ever again. When you had the second bubba, you had it sussed, didn't you? You got yourself done, baby number one was as shiny as a new pin, and number two, maybe a little sick stain on the bib, but washed dressed and fed and you still had time to read a book to number one before you had to be at toddler group.
Im hoping cancer is the same!
The first one i was a novice. Didn't know if i could manage. I felt the need to linger in bed longer than possible if i could, as i did with baby number one. If he slept, so did i.
By number two, I'm sure its not a walk in the park (its a far more difficult baby than number one!), but i feel more strength.
I think ill stop at two tho!!!
On a serious note, the last 2 years have been crazy. Finding out i had cancer was a rollercoaster. Its nothing, its something, its nothing.......ITS CANCER. The chemo was rough. The heart attack scary.
Friends who disappeared. And friends who dived in to support me, out of the blue. My life changed from a partying working girl to an old lady, almost. I still had the same personality but anxiety was added to the mix. Living with it afterwards has been challenging. The fear of it returning. And i think i did well with that. The support group......always there and always spot on with support. And the 'friends' who expect you to go back to normal cos you're in remission!
And just when i start to feel a bit more 'normal', its back again. Found unexpectedly whilst MRI for a bad back! Who'd have thought.
I feel like I'm Inspector Clouseau in the Pink Panther, living my life constantly on the alert for Cato (Hodgkins Lymphoma), the man servant, trained to attack when i least expect it! And at the moment Cato is winning 2-1, but i have a 'behm' (bomb!) for my little yellow friend!
For you ladies, do you remember having your first baby? You thought there was no way you would ever get baby bathed and dressed and fed, and yourself showered and dressed so that you could go out ever again. When you had the second bubba, you had it sussed, didn't you? You got yourself done, baby number one was as shiny as a new pin, and number two, maybe a little sick stain on the bib, but washed dressed and fed and you still had time to read a book to number one before you had to be at toddler group.
Im hoping cancer is the same!
The first one i was a novice. Didn't know if i could manage. I felt the need to linger in bed longer than possible if i could, as i did with baby number one. If he slept, so did i.
By number two, I'm sure its not a walk in the park (its a far more difficult baby than number one!), but i feel more strength.
I think ill stop at two tho!!!
On a serious note, the last 2 years have been crazy. Finding out i had cancer was a rollercoaster. Its nothing, its something, its nothing.......ITS CANCER. The chemo was rough. The heart attack scary.
Friends who disappeared. And friends who dived in to support me, out of the blue. My life changed from a partying working girl to an old lady, almost. I still had the same personality but anxiety was added to the mix. Living with it afterwards has been challenging. The fear of it returning. And i think i did well with that. The support group......always there and always spot on with support. And the 'friends' who expect you to go back to normal cos you're in remission!
And just when i start to feel a bit more 'normal', its back again. Found unexpectedly whilst MRI for a bad back! Who'd have thought.
I feel like I'm Inspector Clouseau in the Pink Panther, living my life constantly on the alert for Cato (Hodgkins Lymphoma), the man servant, trained to attack when i least expect it! And at the moment Cato is winning 2-1, but i have a 'behm' (bomb!) for my little yellow friend!
Wednesday 18 November 2015
17.11.15
Saw Dr Jack. He said to me, 'shall we do it standing up?' Well, i was all of a dither. I asked what are we doing? Of course it was to check my gland in the groin to see if its big enough to biopsy. So i stood whilst he rummaged. He made a few comments that made me snigger! 'This probably isn't the best position!' etc.
So I'm now waiting for an appointment to have my lymphectomy. The whole gland has to be removed to make sure we don't have to go back for another 'grab'. Theres probably a fair bit of scar tissue involved in the lump. Don't wanna be biopsying that.
Hes as convinced as i am that its HL but as he rightly said, 'never assume'!
So following the biopsy, and it being positive, i will have a Hickman line installed! Then ESHAP chemo and hope that gets rid of the blighters. Injections to encourage my bone marrow to chuck out loads of stem cells that will be collected, counted, processed and frozen ready for me to welcome them home to mama.
I will be an inpatient mon to fri whilst they fill me with more toxins, for at least 2 times, possibly more. One of the drugs is given continuously for 4 days! Im gonna love that! Then when i can't take any more, a CT scan to check if I'm in remission (please please please) and then bung my precious little stem cells back in me, which apparently is no picnic.
He told me its not easy. But its easier than dying!
As usual when i see Dr Jack, i take a photo of myself so i can see the difference as the months pass. I had hoped at some stage to put them all in a row and see my physical recovery. Thats not going to plan. I wonder what my next photo will look like? Heres todays pic tho.
Saw Dr Jack. He said to me, 'shall we do it standing up?' Well, i was all of a dither. I asked what are we doing? Of course it was to check my gland in the groin to see if its big enough to biopsy. So i stood whilst he rummaged. He made a few comments that made me snigger! 'This probably isn't the best position!' etc.
So I'm now waiting for an appointment to have my lymphectomy. The whole gland has to be removed to make sure we don't have to go back for another 'grab'. Theres probably a fair bit of scar tissue involved in the lump. Don't wanna be biopsying that.
Hes as convinced as i am that its HL but as he rightly said, 'never assume'!
So following the biopsy, and it being positive, i will have a Hickman line installed! Then ESHAP chemo and hope that gets rid of the blighters. Injections to encourage my bone marrow to chuck out loads of stem cells that will be collected, counted, processed and frozen ready for me to welcome them home to mama.
I will be an inpatient mon to fri whilst they fill me with more toxins, for at least 2 times, possibly more. One of the drugs is given continuously for 4 days! Im gonna love that! Then when i can't take any more, a CT scan to check if I'm in remission (please please please) and then bung my precious little stem cells back in me, which apparently is no picnic.
He told me its not easy. But its easier than dying!
As usual when i see Dr Jack, i take a photo of myself so i can see the difference as the months pass. I had hoped at some stage to put them all in a row and see my physical recovery. Thats not going to plan. I wonder what my next photo will look like? Heres todays pic tho.
Tuesday 17 November 2015
13/11/15
Friday the 13th!!!! Will i get some news today?
I hope to have a phone call from Karen, Dr Jacks secretary regarding an appointment to see him, either that or to find out my wedding ring finger size! We all know secretarys do the gift shopping for their bosses!
And I'm also hoping the results from the PET will show that if its back, i will not need a biopsy, not looking forward to that. Im not a voodoo doll - please don't stick needles in me!
Yay, not heard a flipping dicky bird!
I am celebrating my 'no news is good news' with a glass (or 4) of Prosecco.
A few days on and Dr Jack has called me. He didnt know id been scanned, thats why I've been left waiting. He apologised. I can forgive him anything!!
More glands have come up in the groin area meaning i may be able to have the biopsy done there and not guided by a CT scanner deep in my body! Im happy about that. Never before would i have believed id be happy about having a biopsy, but at least then i can get on with whatever treatment i need and hopefully get on with my life!
And this morning his secretary rang me and made an appointment to see him at 4pm.
So an afternoon of bath, hair styled, dousing myself with perfume and wearing clothes that make me look a size 10!!!
Only for him to say, 'jump on the scales!!!'
The things we do for the men in our life!
Friday the 13th!!!! Will i get some news today?
I hope to have a phone call from Karen, Dr Jacks secretary regarding an appointment to see him, either that or to find out my wedding ring finger size! We all know secretarys do the gift shopping for their bosses!
And I'm also hoping the results from the PET will show that if its back, i will not need a biopsy, not looking forward to that. Im not a voodoo doll - please don't stick needles in me!
Yay, not heard a flipping dicky bird!
I am celebrating my 'no news is good news' with a glass (or 4) of Prosecco.
A few days on and Dr Jack has called me. He didnt know id been scanned, thats why I've been left waiting. He apologised. I can forgive him anything!!
More glands have come up in the groin area meaning i may be able to have the biopsy done there and not guided by a CT scanner deep in my body! Im happy about that. Never before would i have believed id be happy about having a biopsy, but at least then i can get on with whatever treatment i need and hopefully get on with my life!
And this morning his secretary rang me and made an appointment to see him at 4pm.
So an afternoon of bath, hair styled, dousing myself with perfume and wearing clothes that make me look a size 10!!!
Only for him to say, 'jump on the scales!!!'
The things we do for the men in our life!
Wednesday 4 November 2015
2.11.15
Getting nearer to my PET scan! Nearer to finding out whats going on! And it all leads to anxiety.
Had a few bad dreams/night terrors. Although not sure if the one last night was a night terror as Simon Cowell was in it, discussing the X Factor with me!
Today i have had a few jitters. Ive felt angry and wanted to swear and shout, which i did, but in the comfort and privacy of my own home!
Hurry up wednesday (PET day) and hurry up results so i can move on to the next step of diagnosis....or hopefully, its all gone and it was all a bad night terror!
Its here!
I woke at 6.30am, too late to eat or drink (other than water!). The NBM (nil by mouth) order started at 5.30. Why is it, when you know you can't eat, you want to? You're desperate to.
I arrived at the unit with plenty of time in the hope they would 'do' me earlier, and they did. The usual technician was there, the one who can cannulate you with his eyes shut! Its always nice to know you have a competent technician when its your own veins at risk.
Cannulated and deposited in a different place to normal (how did i ever get into the situation of it being normal to be in these types of places?). It was like a broom cupboard! With a chair that filled half of it, and a small heater on the wall, blasting out a gust of hot air, noisily!
Getting nearer to my PET scan! Nearer to finding out whats going on! And it all leads to anxiety.
Had a few bad dreams/night terrors. Although not sure if the one last night was a night terror as Simon Cowell was in it, discussing the X Factor with me!
Today i have had a few jitters. Ive felt angry and wanted to swear and shout, which i did, but in the comfort and privacy of my own home!
Hurry up wednesday (PET day) and hurry up results so i can move on to the next step of diagnosis....or hopefully, its all gone and it was all a bad night terror!
Its here!
I woke at 6.30am, too late to eat or drink (other than water!). The NBM (nil by mouth) order started at 5.30. Why is it, when you know you can't eat, you want to? You're desperate to.
I arrived at the unit with plenty of time in the hope they would 'do' me earlier, and they did. The usual technician was there, the one who can cannulate you with his eyes shut! Its always nice to know you have a competent technician when its your own veins at risk.
Cannulated and deposited in a different place to normal (how did i ever get into the situation of it being normal to be in these types of places?). It was like a broom cupboard! With a chair that filled half of it, and a small heater on the wall, blasting out a gust of hot air, noisily!
So heres my radioactive glucose being administered. And then i get the chance to sit and do nothing for an hour whilst the glucose gets to the active spots. But you know all this..... you've read my blog from before!
But for those who have forgotten. The injection makes me radioactive for a few hours, so i have to steer clear of pregnant women and babies. I have to flush the loo twice. Theres nothing in the literature that says i can't eat as soon as possible tho!!!
I visited the canteen and ordered some food, but it was soooooo bad, i left it and departed quickly with the thoughts of toast and marmalade when i got home.
Im now home, and I've enjoyed the toast. The dogs are pleased to see me, although they are looking a little confused.
Sunday 25 October 2015
25.10.15
Just felt i had to blog to tell you how I'm feeling.
Its amazing. Ive moved on from my bad news! Hey, how did i do that? I was full of tears and fears a few days back. Of course I'm worried about having the scan and biopsy, but I've talked myself into, what will be, will be, and ill worry about it when i get there! I must be superwoman, this isn't normal. And also, if I've got lymphoma again, and i have to have treatment, such is life. Go me!!!
It beats that 'rugby ball in the guts' feeling, and the tightness around the neck and shoulders.
And this weekend has been such a good one. Sad its over really.
Saturday was spent having breakfast with a group of friends, followed by afternoon tea with Chris. And then a few hours of X Factor.
Sunday, i performed in a concert at the BIC. I sang a duet with Steve, Something Inside so Strong.
Then another breakfast with the choir girls, and what a view whilst we ate. Such a gorgeous day.
Just felt i had to blog to tell you how I'm feeling.
Its amazing. Ive moved on from my bad news! Hey, how did i do that? I was full of tears and fears a few days back. Of course I'm worried about having the scan and biopsy, but I've talked myself into, what will be, will be, and ill worry about it when i get there! I must be superwoman, this isn't normal. And also, if I've got lymphoma again, and i have to have treatment, such is life. Go me!!!
It beats that 'rugby ball in the guts' feeling, and the tightness around the neck and shoulders.
And this weekend has been such a good one. Sad its over really.
Saturday was spent having breakfast with a group of friends, followed by afternoon tea with Chris. And then a few hours of X Factor.
Sunday, i performed in a concert at the BIC. I sang a duet with Steve, Something Inside so Strong.
Then another breakfast with the choir girls, and what a view whilst we ate. Such a gorgeous day.
Then back to my house with Kim before travelling to Lyndhurst for a Russell Watson rehearsal. And that was amazing. There were many times we sounded so good. The sopranos are something else. Gave me goosebumps. Roll on tuesday for our concert with Russell. We would like to be the best choir that he sings with, but i bet they all want to be that. Ill let you know!
So a day of fun and laughter. Lisping to Something inside so strong with Becky and Jo. Singing opera in the car on the way to the rehearsal with Kim and Caroline, at the top of our voices. The common denominator for me feeling happy....singing. Oh yes, and eating too!
Well thats all for now. I have to go. I have more contestants to choose for X Factor. Ive picked the same ones as Simon Cowell and Grimmy. Cheryl's mucked up tho! I gotta help Rita now.
Catch you later.
Thursday 22 October 2015
22.10.15
Hello I'm back from my holiday. It was lovely. So warm, with blue skies. A bit chilly in the pool but i splashed about most days whilst squealing with the cold. I was treated like a princess. Lots to eat and drink. Lots of excursions. Kevin and Marion are lovely people, so caring and thoughtful and generous and i could go on forever.
But I'm back now. Back to reality.
And so i wait........
I wait and i wait......
Waiting to hear something about the MDT meeting that was on friday.
Home on sunday, nothing monday, nothing tuesday.
Wednesday i rang Dr Jacks secretary. She's not had the referral she was waiting for!
I telephone the GP and they sent the referral on the 7th......... to the wrong hospital!
To cut a long story short, referral was received today.
Im not worried. Dr Jack said it was nothing, just enlarged glands. And my raised ESR is nothing particular, even tho its the highest its ever been recorded for me.
So just before i left home for work, Dr Jack rang. He asked about my holiday, we discussed Sangria and Prosecco, midges and my bitten to pieces ankles!
Then down to business.
The glands are small, too small to biopsy, but there are quite a few and they are newly enlarged! Worry.
They are in the similar area to my previous lymphoma.
Worry.
They are along my spine, and surrounding major blood vessels which makes it difficult to biopsy.
Worry.
So we're gonna wait 4 weeks or so for them to get bigger, then we're gonna CT scan me and whilst I'm in the scanner, the radiographer is gonna attempt a biopsy cos he/she can see where the needle is going as its gotta go through muscle etc (and probably a bit of fat too! although this news has made me lose my appetite and the diet is going well!)
Worry.
Although there is a chance by the time I'm scanned it could have cleared up and done one!
Wonder what the likelihood of that is? Wonder what the chance is that this 'blip' is nothing but a freaky moment?
Right now I'm fearing the worst. And I'm fearing a stem cell transplant after high intensity chemo to kill my immunity!
To say I'm scared is an understatement. Im watching Live at the Apollo and every so often i laugh at a funny bit....then i remember and feel sick again.
Luckily i have the Lymphoma Support group there to give me support and a few virtual hugs. And my boys and Chloe have been very sweet, even Chris, considering i told him the cells from the first born are usually the best match for a stem cell transplant! And then i have a few friends that are trying to keep me positive. And of course, Dr Jack.
So, onwards and upwards. I hope to god its all a storm in a teacup, but what will be, will be. Que sera sera. C'est la vie. Just one thing........please leave me with hair this time!!
Hello I'm back from my holiday. It was lovely. So warm, with blue skies. A bit chilly in the pool but i splashed about most days whilst squealing with the cold. I was treated like a princess. Lots to eat and drink. Lots of excursions. Kevin and Marion are lovely people, so caring and thoughtful and generous and i could go on forever.
But I'm back now. Back to reality.
And so i wait........
I wait and i wait......
Waiting to hear something about the MDT meeting that was on friday.
Home on sunday, nothing monday, nothing tuesday.
Wednesday i rang Dr Jacks secretary. She's not had the referral she was waiting for!
I telephone the GP and they sent the referral on the 7th......... to the wrong hospital!
To cut a long story short, referral was received today.
Im not worried. Dr Jack said it was nothing, just enlarged glands. And my raised ESR is nothing particular, even tho its the highest its ever been recorded for me.
So just before i left home for work, Dr Jack rang. He asked about my holiday, we discussed Sangria and Prosecco, midges and my bitten to pieces ankles!
Then down to business.
The glands are small, too small to biopsy, but there are quite a few and they are newly enlarged! Worry.
They are in the similar area to my previous lymphoma.
Worry.
They are along my spine, and surrounding major blood vessels which makes it difficult to biopsy.
Worry.
So we're gonna wait 4 weeks or so for them to get bigger, then we're gonna CT scan me and whilst I'm in the scanner, the radiographer is gonna attempt a biopsy cos he/she can see where the needle is going as its gotta go through muscle etc (and probably a bit of fat too! although this news has made me lose my appetite and the diet is going well!)
Worry.
Although there is a chance by the time I'm scanned it could have cleared up and done one!
Wonder what the likelihood of that is? Wonder what the chance is that this 'blip' is nothing but a freaky moment?
Right now I'm fearing the worst. And I'm fearing a stem cell transplant after high intensity chemo to kill my immunity!
To say I'm scared is an understatement. Im watching Live at the Apollo and every so often i laugh at a funny bit....then i remember and feel sick again.
Luckily i have the Lymphoma Support group there to give me support and a few virtual hugs. And my boys and Chloe have been very sweet, even Chris, considering i told him the cells from the first born are usually the best match for a stem cell transplant! And then i have a few friends that are trying to keep me positive. And of course, Dr Jack.
So, onwards and upwards. I hope to god its all a storm in a teacup, but what will be, will be. Que sera sera. C'est la vie. Just one thing........please leave me with hair this time!!
Saturday 10 October 2015
07.10.15
Ive been trying to sort out some travel insurance! Not an easy task.
Because I've had an MRI on my spine and I'm awaiting the results, they won't give me any insurance.
So an appointment made with the GP to find out that I've got a knackered old back!
What a shock tho!
It turns out there are multiple small lymph glands in the same area that my lymphoma started. A moment of stunned silence followed by the feeling of a knife in my chest.
Luckily it didn't take me long to 'snap out of it' and think up a few excuses.
1. Scar tissue
2. Infection
3. Wrong reading of a scan
Pick one, ill be happy with any of them!
I sent Dr Jack a text hoping he would turn up in shining armour on a white horse.
Instead he texted back to come the the Harbour Hospital at 5.15 on friday afternoon.
So i did.
'I don't think its anything to be worried about.'
He said he'd take some blood to check my ESR and he will try and compare the MRI and my last PET scan.
He used a latex glove as a tourniquet and he drew blood himself. He informed me he's taken his own blood before, cos he's a real man! He did a flipping good job, no bruises.
So off i trotted after a fun filled appointment, happy with his comments.
You know what I'm gonna say, don't you?
He sent me an email today saying my ESR has gone up to 62, its normally 25-50. He's still got to compare scan results at the MDT meeting on friday morning and then he'll decide if i need a PET scan to check things out.
I could do without this stress. I wouldn't mind if when i was stressed i stopped eating and lost weight, but no, not me.
So here i am, flying to Spain tomorrow morning, with the weight of the world on my shoulders. I feel quite worried cos i know it means a stem cell transplant if I've relapsed.
Fingers crossed.
Ive been trying to sort out some travel insurance! Not an easy task.
Because I've had an MRI on my spine and I'm awaiting the results, they won't give me any insurance.
So an appointment made with the GP to find out that I've got a knackered old back!
What a shock tho!
It turns out there are multiple small lymph glands in the same area that my lymphoma started. A moment of stunned silence followed by the feeling of a knife in my chest.
Luckily it didn't take me long to 'snap out of it' and think up a few excuses.
1. Scar tissue
2. Infection
3. Wrong reading of a scan
Pick one, ill be happy with any of them!
I sent Dr Jack a text hoping he would turn up in shining armour on a white horse.
Instead he texted back to come the the Harbour Hospital at 5.15 on friday afternoon.
So i did.
'I don't think its anything to be worried about.'
He said he'd take some blood to check my ESR and he will try and compare the MRI and my last PET scan.
He used a latex glove as a tourniquet and he drew blood himself. He informed me he's taken his own blood before, cos he's a real man! He did a flipping good job, no bruises.
So off i trotted after a fun filled appointment, happy with his comments.
You know what I'm gonna say, don't you?
He sent me an email today saying my ESR has gone up to 62, its normally 25-50. He's still got to compare scan results at the MDT meeting on friday morning and then he'll decide if i need a PET scan to check things out.
I could do without this stress. I wouldn't mind if when i was stressed i stopped eating and lost weight, but no, not me.
So here i am, flying to Spain tomorrow morning, with the weight of the world on my shoulders. I feel quite worried cos i know it means a stem cell transplant if I've relapsed.
Fingers crossed.
10.09.21
It only seems like yesterday i was starting chemo, but it was 21 months ago. Even tho at the time, it dragged, its also whizzed by.
Ive become aware how negative my life has become. Not completely negative. Im a positive person. But when i compare my conversations from before diagnosis and now, theres a lot about health issues. Cancer has become a large part of my life, its never far from my mind. And lets face it, i have plenty of alone time to stew over it.
In some ways I'm very proud of what I've been through and how i coped and managed it all. It wasn't a walk in the park! But in other ways i hate that my life has negative patches that weren't there before. And its nothing i can 'move on' from as a friend suggested the other day. "Maybe you can move on if you leave the support group!' To say i was stunned is an understatement. I had explained what the support group was for me. People who had been through the same or similar who were able to empathise and understand fully. They are my first port of call for support when i have any issue with regard my health. They are amazing people. My family are my second port of call. Friends my third port of call.
So to leave the group and 'move on' just doesn't figure.
I know people don't want to hear negativity and they want things to go back to normal, but it doesn't work like that. Id love to go back to normal, but this is normal for me.
It has changed me. Im a different person.
Living with the knowledge that you're now at risk of a further cancer because of the chemo. That the cancer you had could return - thats why you have 3 monthly check ups. Its not just for a catch up with your oncologist.
Of course thats not exclusive to me, as I've been told by a friend. Others also worry about getting cancer, but once you've been through it, its with you forever. Its like a life sentence with no parole. But its how you deal with it. I think i deal with it pretty well. Im not depressed, nor do i spend any time crying over what i went through. I try to get on with my life and not let it stop me doing things that I'm able to do. I laugh and joke about it most of the time. But its always there.
So today is rheumatologist day. I am hoping nothing is going to be inserted, anywhere! A feel of the spine or the joints is ok, but come near me with anything metal and sharp, or covered in KY jelly isn't gonna work. Not today please! A nice gentle massage or a pedicure.
Well she was very nice and understanding. Nothing was inserted and I've been referred to the scan department for an MRI of my spine. So that'll be fun!
It only seems like yesterday i was starting chemo, but it was 21 months ago. Even tho at the time, it dragged, its also whizzed by.
Ive become aware how negative my life has become. Not completely negative. Im a positive person. But when i compare my conversations from before diagnosis and now, theres a lot about health issues. Cancer has become a large part of my life, its never far from my mind. And lets face it, i have plenty of alone time to stew over it.
In some ways I'm very proud of what I've been through and how i coped and managed it all. It wasn't a walk in the park! But in other ways i hate that my life has negative patches that weren't there before. And its nothing i can 'move on' from as a friend suggested the other day. "Maybe you can move on if you leave the support group!' To say i was stunned is an understatement. I had explained what the support group was for me. People who had been through the same or similar who were able to empathise and understand fully. They are my first port of call for support when i have any issue with regard my health. They are amazing people. My family are my second port of call. Friends my third port of call.
So to leave the group and 'move on' just doesn't figure.
I know people don't want to hear negativity and they want things to go back to normal, but it doesn't work like that. Id love to go back to normal, but this is normal for me.
It has changed me. Im a different person.
Living with the knowledge that you're now at risk of a further cancer because of the chemo. That the cancer you had could return - thats why you have 3 monthly check ups. Its not just for a catch up with your oncologist.
Of course thats not exclusive to me, as I've been told by a friend. Others also worry about getting cancer, but once you've been through it, its with you forever. Its like a life sentence with no parole. But its how you deal with it. I think i deal with it pretty well. Im not depressed, nor do i spend any time crying over what i went through. I try to get on with my life and not let it stop me doing things that I'm able to do. I laugh and joke about it most of the time. But its always there.
So today is rheumatologist day. I am hoping nothing is going to be inserted, anywhere! A feel of the spine or the joints is ok, but come near me with anything metal and sharp, or covered in KY jelly isn't gonna work. Not today please! A nice gentle massage or a pedicure.
Well she was very nice and understanding. Nothing was inserted and I've been referred to the scan department for an MRI of my spine. So that'll be fun!
Saturday 29 August 2015
28.08.15
Here it is. Ive gone from 3 months to 4 months this time. Check up with Dr Jack, that is.
I can't say I'm particularly anxious but i do enjoy his own brand of reassurance.
The things that could go against me :-
1. Im itchy - more than likely the hot, humid weather.
2. Im sweating at times - also can be explained by the weather or return of the menopause.
3. Im fatigued - thats normal after chemo, as well as a symptom of HL.
4. I have back ache/stiffness, like i had before i was diagnosed. My X-rays and bloods are normal so can't blame arthritis. This is the one thing that worries me.
I will find out later today!!!
So heres my appointment photo, i take one every appointment to see the difference. One day ill put them all in a row and see how I've gone from fat bald and ugly to just ugly! Hopefully anyway.
Today i am doing a bit of reading for a panel that I've joined as a proof reader before i nip to Castle Point for a coffee with a friend and then having some fence panels erected.
Another busy busy day!
Who'd have thought!!
Here it is. Ive gone from 3 months to 4 months this time. Check up with Dr Jack, that is.
I can't say I'm particularly anxious but i do enjoy his own brand of reassurance.
The things that could go against me :-
1. Im itchy - more than likely the hot, humid weather.
2. Im sweating at times - also can be explained by the weather or return of the menopause.
3. Im fatigued - thats normal after chemo, as well as a symptom of HL.
4. I have back ache/stiffness, like i had before i was diagnosed. My X-rays and bloods are normal so can't blame arthritis. This is the one thing that worries me.
I will find out later today!!!
So heres my appointment photo, i take one every appointment to see the difference. One day ill put them all in a row and see how I've gone from fat bald and ugly to just ugly! Hopefully anyway.
So, the symptoms. Itching, sweating, fatigue!!!
I forgot to tell him. Oh yes thats the other symptom - memory loss!
He said the back ache/stiffness probably isn't lymphoma but he can't guarantee it of course. However my ESR was 24 which is remarkably low for me. Strange considering i have a painful back, I've had a sore toe and I've had a virus upper respiratory tract infection. Inflammation everywhere and wheres my ESR - 24!!
I know i like to do things in my own indomitable style but this is ridiculous.
Dr Jack was his usual charming, caring, interesting, funny, lovable self. He has a very lucky wife!
We talked of relapsing and treatment, holidays and camping, food and wine, music and singing, and a whole host of other stuff, but not about my symptoms!! My fault, not his. So over-awed with my low ESR, that i lost my mind in the process!
So apparently a celebration is in order.
Out for Tapas with the Billy no mates group. Thats my name for the group I've joined. Lots of people wanting to make some friends. Im hoping they wont be offended by my name for the group - after all, I'm a Billy no mates too!
Well it was a wonderful evening. The food was expensive for the portion size, but it was very nice. Prosecco was involved of course as you can see.
Met a very nice lady called Silvia who's on the same wavelength as me. We will be meeting up outside of the group, I'm sure.
So lots of laughter was had, and then outside to watch the fireworks before home. Next meet up on bank holiday monday. Lunch at the Slug and Lettuce - remind me not to have the salad!Today i am doing a bit of reading for a panel that I've joined as a proof reader before i nip to Castle Point for a coffee with a friend and then having some fence panels erected.
Another busy busy day!
Who'd have thought!!
Thursday 27 August 2015
27.08.15
A week of appointments. Dentist, bloods, GP and Dr Jack! All in the same week. I must have done something really bad in a former life.
Oh and a dose of tonsillitis and the GP wouldn't give me antibiotics cos 'we don't do that anymore unless its severe'. I thought having low immunity and the fact that i hang on to illnesses longer than most, would be good enough reason to prescribe them for me. But no.......
Needless to say 4 days on and i still have an unbelievably sore throat, and my cough has returned.
It seems if i do something good, i suffer for the next few days.
I met up with the Hodgkins Lymphoma Support Group last weekend.
When i arranged it, there was about 30 people who wanted to meet up. On the day there was 3 of us!
We had a lovely time tho. I met Kate and Shell and we had a jolly good natter. Well worth the trip to Oxford. It was a beautiful day.
Kate and I went for lunch. Two peas in a pod. We both have the same irritations, and i don't mean dermatitis!
A week of appointments. Dentist, bloods, GP and Dr Jack! All in the same week. I must have done something really bad in a former life.
Oh and a dose of tonsillitis and the GP wouldn't give me antibiotics cos 'we don't do that anymore unless its severe'. I thought having low immunity and the fact that i hang on to illnesses longer than most, would be good enough reason to prescribe them for me. But no.......
Needless to say 4 days on and i still have an unbelievably sore throat, and my cough has returned.
It seems if i do something good, i suffer for the next few days.
I met up with the Hodgkins Lymphoma Support Group last weekend.
When i arranged it, there was about 30 people who wanted to meet up. On the day there was 3 of us!
We had a lovely time tho. I met Kate and Shell and we had a jolly good natter. Well worth the trip to Oxford. It was a beautiful day.
Kate and I went for lunch. Two peas in a pod. We both have the same irritations, and i don't mean dermatitis!
And we look so similar too!
So because it was a day out, i washed behind my ears and even wore heels! The next day my big toe was so sore! I started to think i had gout! A bit of arthritis i think brought on by the heels. I also had 2 blisters. And they were my comfortable shoes!
Ive joined a group of people too. Bournemouth Social Circle. I like to call it the Billy No Mates club. Its for us poor unfortunates who don't have any friends any more due to various reasons! I must say, they're a nice bunch. And lots of meet ups. I had to cancel a couple this week due to my wretched tonsils, but friday is another day.
Tapas at La Tasca!
Im hoping its in Seville or Benidorm, but i have a sneaky feeling its in Bournemouth! I have ironed my flamenco dress ready, and have my passport and Euros just in case!
Talking of passports, i saw my buddy Marion today (i do still have some friends). We had coffee and cake in M&S, and did a little retail therapy. Im still not up to too much activity but i did my best. Well she has a villa in Spain and she's hoping to go out there in september for a month or so and she's asked if i wanna fly over there for a break! So if i can find someone to have the dogs (hoping Chris or Chloe will read this!!!) i will be jetting off for a few days of sun, sea and sangria. Of course i will have a few meet ups with my new buddies that i will have to cancel, but hey ho, when you're as popular as me you have to do these things!
Friday 14 August 2015
13.08.15
What i find ironic.....
I was told by my haematologist that it would be very unlikely for me to relapse. He feels i could be 'cured', and 'for life'! So you'd think id be happy with that! But you have no guarantees. And i can worry till my dying day, and only then will i be able to appreciate that i was cured!
Do you see what i mean? It could come back tomorrow, but it might not! And no percentages, like its 50/50 whether it returns, make me feel happier, or worse. I can't appreciate being 'cured for life' till i die!
Its a funny old world.
Well its coming up to my 5th 3 monthly check up, from the neck up! I don't know why i always feel the need to say, 'check up from the neck up' cos actually its from the neck down! Of course the same old fears arise. I have a lump in my groin, but I'm sure its scar tissue. Itching, sweats, and of course they can all be explained away, but equally 2+2 can be put together and add up to 5!
What a way to live my life, and I'm not the only one.
So don't assume, 'He/she is in remission. He/she is cured. He/she is back to normal.'
Yes we are 'normal' but its not 'back to normal'. This is our new normal.
A new normal, filled with anxiety, some well hidden, some not hidden at all. I would liken it to post traumatic stress disorder. Well i suppose it is PTSD for some people.
So many relationships are lost due to cancer. Friendships, spouses and partners, and sometimes family members. Usually people who don't understand and can't empathise. Or can't be bothered to empathise. Its too much like hard work to try and understand how someone is feeling. They don't want to waste a few minutes of their healthy life listening to what someone else has been through.
Theres nothing better, in a world of very little understanding, to talk to someone, and they 'get you'.
Its a lonely life where you feel its best you keep quiet, although you'd like to 'educate' someone or unburden yourself, just striving for someone to understand. But if you do, they think, 'here she goes again, GET OVER IT!'
Thank goodness for the UK Hodgkins Lymphoma Support Group.
What i find ironic.....
I was told by my haematologist that it would be very unlikely for me to relapse. He feels i could be 'cured', and 'for life'! So you'd think id be happy with that! But you have no guarantees. And i can worry till my dying day, and only then will i be able to appreciate that i was cured!
Do you see what i mean? It could come back tomorrow, but it might not! And no percentages, like its 50/50 whether it returns, make me feel happier, or worse. I can't appreciate being 'cured for life' till i die!
Its a funny old world.
Well its coming up to my 5th 3 monthly check up, from the neck up! I don't know why i always feel the need to say, 'check up from the neck up' cos actually its from the neck down! Of course the same old fears arise. I have a lump in my groin, but I'm sure its scar tissue. Itching, sweats, and of course they can all be explained away, but equally 2+2 can be put together and add up to 5!
What a way to live my life, and I'm not the only one.
So don't assume, 'He/she is in remission. He/she is cured. He/she is back to normal.'
Yes we are 'normal' but its not 'back to normal'. This is our new normal.
A new normal, filled with anxiety, some well hidden, some not hidden at all. I would liken it to post traumatic stress disorder. Well i suppose it is PTSD for some people.
So many relationships are lost due to cancer. Friendships, spouses and partners, and sometimes family members. Usually people who don't understand and can't empathise. Or can't be bothered to empathise. Its too much like hard work to try and understand how someone is feeling. They don't want to waste a few minutes of their healthy life listening to what someone else has been through.
Theres nothing better, in a world of very little understanding, to talk to someone, and they 'get you'.
Its a lonely life where you feel its best you keep quiet, although you'd like to 'educate' someone or unburden yourself, just striving for someone to understand. But if you do, they think, 'here she goes again, GET OVER IT!'
Thank goodness for the UK Hodgkins Lymphoma Support Group.
Saturday 1 August 2015
01.08.15
Helloooooo
I thought earlier i must blog about something, but i can't remember what!
So I will tell you about my return to Facebook!
I went off FB 4 and half months ago. I was getting a bit wound up by all the activity on there. It seemed to me everyone had an active social life except for me. My usual social life had disappeared since i started chemo, obviously, and i imagined it would return after my treatment finished, but sadly i was wrong. Ive been informed its cos people don't know what to say to me??? But to be fair, they don't need to say anything, i can talk for England!
So to stop getting wound up, i decided to come off of FB. However, my saviour, the Hodgkins Lymphoma UK site, is only accessible via FB so i had to still log on so decided to use my dogs profile, Loki. Not everyone understood why i wasn't 'their friend' anymore, but most were ok and didn't give me a hard time.
So many of my 'friends' from the lymphoma page added me, and many from choir, and gradually my friend list got longer and longer, and last week when out at a charity disco (that was an experience) Rachel took some photos and wanted to tag me in them. As my social life seemed to have returned, i decided to take the step to return as Jill.
Firstly, i changed my profile picture. The comments and 'likes' i had was immense. Made me feel so good. All my friends welcoming me back and telling me i was looking good. I sort of forgot they didn't know what i looked like - theres been a change in the last 4-5 months. Id like to say more of a change, like 3 stones worth of change, but no! So i was welcomed back into the fold.
But then, i noticed some 'friends' had unfriended me. One had not only unfriended me, but my sons too! Its funny how people think its all about them! Its so sad really cos i need good friends now after what I've been through.
So...the charity disco!!!
We arrived in style - i drove! Myself, Rachel, Linzi, Mark and Simon. The boys plied me with J2O's, even when i said id had enough. Some of the people there were 'unusual'. The DJ did a robotic dance half way through. I stared open mouthed at the ridiculousness of it! If thats even a word, ridiculousness??
Despite everything, we had a good time. Lots of silliness, as you can see by the photos.
At home time, (it didn't come quick enough) a curry was mentioned. So we drove to Joy in Ferndown and piled in, tummies rumbling. Oh my goodness, it was yummy. It was midnight and we were eating curry and naan and all sorts of side dishes, not to mention the poppadoms. Im getting hungry just thinking of it.
The conversation was interesting and a bit heated at times. I loved it!!
After all food was demolished, we headed back to the car. Some doughnut (Mark) had left the door open. Not unlocked. OPEN. Luckily it was late at night so there wasn't any takers!
I dumped them all back at their gaff and off home to lay in bed, stuffed and uncomfortable. I woke with a huge hangover, which is odd considering i didn't even drink alcohol!
I think you could say it was a good night.
Helloooooo
I thought earlier i must blog about something, but i can't remember what!
So I will tell you about my return to Facebook!
I went off FB 4 and half months ago. I was getting a bit wound up by all the activity on there. It seemed to me everyone had an active social life except for me. My usual social life had disappeared since i started chemo, obviously, and i imagined it would return after my treatment finished, but sadly i was wrong. Ive been informed its cos people don't know what to say to me??? But to be fair, they don't need to say anything, i can talk for England!
So to stop getting wound up, i decided to come off of FB. However, my saviour, the Hodgkins Lymphoma UK site, is only accessible via FB so i had to still log on so decided to use my dogs profile, Loki. Not everyone understood why i wasn't 'their friend' anymore, but most were ok and didn't give me a hard time.
So many of my 'friends' from the lymphoma page added me, and many from choir, and gradually my friend list got longer and longer, and last week when out at a charity disco (that was an experience) Rachel took some photos and wanted to tag me in them. As my social life seemed to have returned, i decided to take the step to return as Jill.
Firstly, i changed my profile picture. The comments and 'likes' i had was immense. Made me feel so good. All my friends welcoming me back and telling me i was looking good. I sort of forgot they didn't know what i looked like - theres been a change in the last 4-5 months. Id like to say more of a change, like 3 stones worth of change, but no! So i was welcomed back into the fold.
But then, i noticed some 'friends' had unfriended me. One had not only unfriended me, but my sons too! Its funny how people think its all about them! Its so sad really cos i need good friends now after what I've been through.
So...the charity disco!!!
We arrived in style - i drove! Myself, Rachel, Linzi, Mark and Simon. The boys plied me with J2O's, even when i said id had enough. Some of the people there were 'unusual'. The DJ did a robotic dance half way through. I stared open mouthed at the ridiculousness of it! If thats even a word, ridiculousness??
Despite everything, we had a good time. Lots of silliness, as you can see by the photos.
The conversation was interesting and a bit heated at times. I loved it!!
After all food was demolished, we headed back to the car. Some doughnut (Mark) had left the door open. Not unlocked. OPEN. Luckily it was late at night so there wasn't any takers!
I dumped them all back at their gaff and off home to lay in bed, stuffed and uncomfortable. I woke with a huge hangover, which is odd considering i didn't even drink alcohol!
I think you could say it was a good night.
Wednesday 15 July 2015
15.07.15
Hello. Its been a while!
I thought id rear my head today as its a year since my last chemo. My first anniversary.
So what's new?
Remarkably not much.
The diet hasn't shown its face since my holiday in Brittany! Ive still lost a stone, but its up and down. Ive started doing it many times and then i get invited out to different eateries and it all goes out the window.
At least I'm being invited out now tho, although its the same people.
Since my hols I've been to choir, about 9 times. 2 were performances where i sang solos! And although the second performance i was recovering from a chest infection, they weren't too bad!
Im no Beyonce tho!
Ive been Prefect a couple of times with Kelly whilst Tee was away. I enjoyed that. I need a purpose in life I've decided. I need to be useful and needed! Other than cleaning up the kitchen after Sam of course.
Ive seen the lovely Lyn, sometimes accompanied by Rose and Nat, or Nose and Rat as i affectionately call them. We've been for lunch, for dinner, for a party, for walks. They are a constant stream of amusement. In fact today, for my anniversary, Lyn took me out for lunch and plied me with Prosecco!
Hello. Its been a while!
I thought id rear my head today as its a year since my last chemo. My first anniversary.
So what's new?
Remarkably not much.
The diet hasn't shown its face since my holiday in Brittany! Ive still lost a stone, but its up and down. Ive started doing it many times and then i get invited out to different eateries and it all goes out the window.
At least I'm being invited out now tho, although its the same people.
Since my hols I've been to choir, about 9 times. 2 were performances where i sang solos! And although the second performance i was recovering from a chest infection, they weren't too bad!
Im no Beyonce tho!
Thats me singing in the front!
Ive seen the lovely Lyn, sometimes accompanied by Rose and Nat, or Nose and Rat as i affectionately call them. We've been for lunch, for dinner, for a party, for walks. They are a constant stream of amusement. In fact today, for my anniversary, Lyn took me out for lunch and plied me with Prosecco!
Had a lovely time.
Ive seen Jane a few times. We go back a long way. We're like 2 peas in a pod although i do recall once going in to an office for a meeting and it was commented that Jane had brought her mum along! Bloody cheek!
We went for a cream tea the other day. I didn't realise where the venue was - it was one of these groupon things. We ended up driving to Fareham, nearly an hour, for the most revolting cream tea I've ever had. The sandwiches were made up with different types of bread, which intrigued Jane quite a bit. She doesn't get out much! The little cakes were stuck to the plate. The jam was more like Gelignite! And the cream tasted a bit sterile. Similar to Drapolene!
We did have a treat on the way home tho. Stopped at a red light and a motor bike drove past and turned and looked at me. More of a stare. When the lights changed to green, he revved up, and zoomed off, doing a wheelie on the way, but an epic fail. I think it was to impress us. It didn't!
'Hi ho Silver, away', and 'Kemosabe' were our catchphrases for the journey home.
I was invited to a Jewish engagement party which i attended with Lise. Had a lovely time. It was an experience. The bride and groom to be - Ofra and Andrew - were so sweet. The food was lovely, especially the cheese cake, to die for. And i was intrigued by the Grace after Meals. The humour was rife. My table neighbour got himself and his wife a drink (coke in a wine glass - it was all soft drinks). He commented maybe he should have got everyone a drink. Somebody replied, 'It would be a cheap round!' Oh that tickled me!
Lise, me, Ofra and Andrew.
Visited Joe in London. Had a lovely time with him and Jon. We ate and then went for something to eat and then had dinner, and i think we may have had something to eat after all that!!!!
And watched a bit of Ru Pauls Drag Race. Loved it, what a hoot.
And an evening with Sharon and Simon, which was very entertaining. But then its always entertaining when Prosecco and dips and nibbles are in the mix. A very enjoyable evening.
And of course the odd trip to Chris and Chloe which is always entertaining.
The negative side is the trips to the GP. Ive been a few too many times. Itchy underarms and hot flushes (both a sign of Lymphoma!), bad back, followed by X-rays of spine and hips, underarms again, a cold which became a chest infection (last time i had a chest infection i had a heart attack!), and anxiety!
None of it has been sorted as yet. I still have itchy underarms and hot flushes, chest infection is on the way out, antibiotics now finished. But i have been referred to the rheumatologists. An urgent referral. I got the appointment today, 10th September! I hope I'm still alive by then, id hate to miss it! I may be MRI'd. I was hoping id left scans behind! And of course, I'm still going to bed and waking up half an hour later in a right state cos i haven't done something! Of course its all in my head. And fatigue on top of all this.
Anyway, its my 3 month check up the end of august. Can you wait that long till i come back with more scintillating tales of my day to day life?
Saturday 13 June 2015
12.06.15
June already.
Blazing June, apparently. Theres been a few nice days but last night the thunder and lightning was amazing. Fork and sheet at the same time.
That makes me smile. Fork and sheet, forking sheet, f*cking sh*t!!!
I really think someones popping drugs in my cocoa!
Since my last blog, I've been on holiday to France. Had such a wonderful time with my lovely, lovely friend Annette and Colin the Clown.
She and i are like 2 peas in a pod but I'm the attractive one!!!
Colin makes me laugh so much.
So a good week was had, but i ate too much, so back on the diet.
Did loads of things apart from eating. Had BBQ's (oh thats still eating), i drank copious amounts of Prosecco (still sort of eating), went to different beaches where Colin fished, you should have seen the one that got away, and Annette and i collected shells and threw the ball for Finn the dog from Finistere. I cuddled Ziggy the cat, and held the week old chick, Chalky White.
An idyllic lifestyle they have and I'm envious.
But boy, the following week....... fatigue arrived.
Im not worried about the fatigue. It just is an excuse to put my feet up and try and get through the copious amount of recordings on the tv.
Last weekend was Rock Choirs 10th anniversary and we celebrated at the NEC - Genting Arena.
Why call it the Genting Arena, i wonder? It reminds me of the words cottaging, hustling or cruising. There's the drugs again!!!
Had a magnificent day.
June already.
Blazing June, apparently. Theres been a few nice days but last night the thunder and lightning was amazing. Fork and sheet at the same time.
That makes me smile. Fork and sheet, forking sheet, f*cking sh*t!!!
I really think someones popping drugs in my cocoa!
Since my last blog, I've been on holiday to France. Had such a wonderful time with my lovely, lovely friend Annette and Colin the Clown.
She and i are like 2 peas in a pod but I'm the attractive one!!!
Colin makes me laugh so much.
So a good week was had, but i ate too much, so back on the diet.
Did loads of things apart from eating. Had BBQ's (oh thats still eating), i drank copious amounts of Prosecco (still sort of eating), went to different beaches where Colin fished, you should have seen the one that got away, and Annette and i collected shells and threw the ball for Finn the dog from Finistere. I cuddled Ziggy the cat, and held the week old chick, Chalky White.
An idyllic lifestyle they have and I'm envious.
But boy, the following week....... fatigue arrived.
Im not worried about the fatigue. It just is an excuse to put my feet up and try and get through the copious amount of recordings on the tv.
Last weekend was Rock Choirs 10th anniversary and we celebrated at the NEC - Genting Arena.
Why call it the Genting Arena, i wonder? It reminds me of the words cottaging, hustling or cruising. There's the drugs again!!!
Had a magnificent day.
And again, fatigue. Its amazing how you do too much and then you're out of the race for a bit.
Friday 15 May 2015
15.5.15
What a lovely semi symmetrical date.
Well today was the day! My 3rd 3 monthly check up with the delightful Dr Jack.
Im normally dreading the, 'lets weigh you,' bit, but of course, 1 stone and 4 lbs down, i was positively champing at the bit to jump on.
He was so impressed. I told him all about the diet that I've been on. He was disgusted that i had to have black tea and coffee. I told him, 'strong and black, like my men.' He replied, 'In your dreams!' He's so interested in everything i say. It makes me feel so special. Im sure he's like that with everyone tho. I told him about my stiff joints, they're slightly better since losing weight, well I'm slightly better all over since losing weight. He told me to keep up with the swimming and aquarobics. I told him about my holiday and we chatted about Brittany.
Then he invited me behind the curtain to do a 'light fandango'. He examined me and then looked at my blood results which were all good. My ESR was 37 rather than the 51 last time.
We talked about future appointments. The next one is in 3 months and he said after the next one, if i like i can go to 4 monthly. My choice. I may choose weekly!
Some people don't like the check ups cos it gives them anxiety, whilst others look forward to the one to one.
Guess which category I'm in????
I not only feel reassured when i see him, but he makes me feel happy. He's such a nice, kind, funny, man. I walk away feeling lighter, and looking forward to the next appointment.
Its just a little crush......
Heres a photo of me today. I take one every time i have a check up and at some stage ill put them all in a row and see the difference. I must say I'm never happy with my photos, but at least i got a bit more hair now.
Anyway, whilst I'm still on a high, I'm gonna publish this and put my feet up before bed time.
Bonsoir mes petits chou-fleur.
What a lovely semi symmetrical date.
Well today was the day! My 3rd 3 monthly check up with the delightful Dr Jack.
Im normally dreading the, 'lets weigh you,' bit, but of course, 1 stone and 4 lbs down, i was positively champing at the bit to jump on.
He was so impressed. I told him all about the diet that I've been on. He was disgusted that i had to have black tea and coffee. I told him, 'strong and black, like my men.' He replied, 'In your dreams!' He's so interested in everything i say. It makes me feel so special. Im sure he's like that with everyone tho. I told him about my stiff joints, they're slightly better since losing weight, well I'm slightly better all over since losing weight. He told me to keep up with the swimming and aquarobics. I told him about my holiday and we chatted about Brittany.
Then he invited me behind the curtain to do a 'light fandango'. He examined me and then looked at my blood results which were all good. My ESR was 37 rather than the 51 last time.
We talked about future appointments. The next one is in 3 months and he said after the next one, if i like i can go to 4 monthly. My choice. I may choose weekly!
Some people don't like the check ups cos it gives them anxiety, whilst others look forward to the one to one.
Guess which category I'm in????
I not only feel reassured when i see him, but he makes me feel happy. He's such a nice, kind, funny, man. I walk away feeling lighter, and looking forward to the next appointment.
Its just a little crush......
Anyway, whilst I'm still on a high, I'm gonna publish this and put my feet up before bed time.
Bonsoir mes petits chou-fleur.
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