30.4.14
Part 2
Nothing exciting has happened.
But i have tried to be a healthy eater today. And the scales say i have lost 3lbs already, mainly cos of yesterdays lack of calories. I have some jelly later and thats my lot!
Also i walked round the block for 16 minutes. I was a bit puffed, but its gotta be done. I checked my pulse when i got back - 104 bpm!! And that was without Dr Jack being present!
If he had been here i could have said,
'My heart went boom buddy boom buddy boom buddy boom buddy boom buddy boom buddy boom boom boom. Goodness gracious me!' and it would have been his fault!
But it wasn't cos of my hearts desire, it was cos my lungs or heart are shouting, 'help us!'
I tried to have a little doze this afternoon.
Do you know if it registers on Facebook when I'm having a doze, or maybe on BBC news channel? Cos every time i fall asleep, someone texts me or rings the door bell! Is it just a coincidence or is there some divine intervention going on?
I wouldn't have minded, but when i answered the doorbell, there was a strange man stood there.
'Hi Im the fish man!'
I was tempted to say, 'Small cod and chips!' But I'm eating healthy today.
So i gave him my 'I'm dying of cancer look' and told him, 'no thanks' quite abruptly!
So thats all for today. Lets hope tomorrow is as uneventful as today, and lets hope i continue to stay feeling not too bad!
Good evening to you all.
Wednesday 30 April 2014
Tuesday 29 April 2014
30.4.14
Good morning.
Number 7 went according to plan except my lovely nurse Lizzie failed to cannulate me the first time so there was a lot of to-ing and fro-ing with the needle in my arm, followed by 'lets start again', which was nice!
But she got it in, and we're off!
Saw Dr Jack.
I don't think he fancies me anymore, now I'm fat and bald and my eyebrows and lashes are thinning!
Very sweetly of him he mentioned id put weight on. I told him it was his fault for giving me steroids. He said i should try to eat healthier (i have cravings for carbs whilst on steroids) and get some exercise (walks and stuff), even if i feel lousy. Easy for him to say.
He examined my chest (just for a sneaky peak at my new larger bustenhalter, i would think). He said, 'You're pulse is quite high.'
I replied, 'thats cos you're in the room!'
He smiled, or was it wind?
I mentioned id been short of breath and had a cough but he said my chest was good (cheeky thing!) and maybe its cardiac, so guess who's now booked in for an ECG and more lung function tests?
For some reason i wasn't feeling wonderful before i left home, and being in the Dorset Cancer Centre doesn't help my feeling of wellbeing at the best of times, so it wasn't a day full of fun that Linda and I usually have. She of course was an angel. She gets me drinks, and food, and she rubbed my feet for ages. It was heavenly.
I suggest she starts a business of being a chemo buddy, cos she'd be a millionaire. You could NEVER get anyone better. She's the most caring, thoughtful, sensitive and giving person i know and I'm so glad she's my bestie. I love her to bits. She just gives and gives.
So that was that. Chemo finished. Injection in tummy and the race begins to get home as quick as possible. One of my previous nurses made a comment as i left. 'Bye love, take care. You weren't as noisy as you normally are!' I don't know what she means!!!!
Got home, kissed me Linda, and up to bed.
OMG it was not nice. I shook and shook. Like the flu shivers. It went on for about hour and a half.
I felt nauseous when the shakes stopped, so nibbled on some digestives (75 cals each i believe) and felt a bit better. By 6pm i felt even better, still dizzy and headachy, but much better.
Sam brought me up a small bowl of curry which i ate the rice and sauce.
Curry? You might think that an odd choice of food when feeling ill. But to be fair, everything tastes the same at this stage. Again its the carbs I'm after.
Slept remarkably well!
And woken feeling ok. Haven't got out of bed yet tho!
I don't think i will be running a marathon today but I'm feeling like i could. The euphoria when the nausea etc goes, and you wake to find out how you're feeling following intensive chemo.
I didn't know that! I read something the other day that said its not an easy chemo, but wasn't convinced. Dr Jack said its not the worst chemo you can have, but it is a harsh one, very intensive! No wonder I've been feeling rough.
Oh yes, he also said if my health deteriorated, i.e. my lungs heart or liver were damaged, he may stop one of the cycles (thats 2 doses). Theres no point treating the cancer if i die from something else!
Which has just reminded me of a man i nursed many years ago. Ive got a feeling he may have had lymphoma. He was treated and treated, and he died. I remember seeing Prof Hamblin with his head in his hands in the office and he said to me, 'That man is cancer free and he's just died of exhaustion.'
So i spose thats what Dr Jack means.
The thought of dropping a cycle makes me happy, but then fills me with anguish. Will the lymphoma return?
Oh the joys of life.
You never know whats round the corner. Its best to enjoy your life as much as you can. Thats what i hope to do when i can walk more than 200 yards without coughing, wheezing of having to slow down!
Anyway I've rambled on for far too long. I may write another blog later if i have anything exciting to say, but i doubt that!
Good morning.
Number 7 went according to plan except my lovely nurse Lizzie failed to cannulate me the first time so there was a lot of to-ing and fro-ing with the needle in my arm, followed by 'lets start again', which was nice!
But she got it in, and we're off!
Saw Dr Jack.
I don't think he fancies me anymore, now I'm fat and bald and my eyebrows and lashes are thinning!
Very sweetly of him he mentioned id put weight on. I told him it was his fault for giving me steroids. He said i should try to eat healthier (i have cravings for carbs whilst on steroids) and get some exercise (walks and stuff), even if i feel lousy. Easy for him to say.
He examined my chest (just for a sneaky peak at my new larger bustenhalter, i would think). He said, 'You're pulse is quite high.'
I replied, 'thats cos you're in the room!'
He smiled, or was it wind?
I mentioned id been short of breath and had a cough but he said my chest was good (cheeky thing!) and maybe its cardiac, so guess who's now booked in for an ECG and more lung function tests?
For some reason i wasn't feeling wonderful before i left home, and being in the Dorset Cancer Centre doesn't help my feeling of wellbeing at the best of times, so it wasn't a day full of fun that Linda and I usually have. She of course was an angel. She gets me drinks, and food, and she rubbed my feet for ages. It was heavenly.
I suggest she starts a business of being a chemo buddy, cos she'd be a millionaire. You could NEVER get anyone better. She's the most caring, thoughtful, sensitive and giving person i know and I'm so glad she's my bestie. I love her to bits. She just gives and gives.
So that was that. Chemo finished. Injection in tummy and the race begins to get home as quick as possible. One of my previous nurses made a comment as i left. 'Bye love, take care. You weren't as noisy as you normally are!' I don't know what she means!!!!
Got home, kissed me Linda, and up to bed.
OMG it was not nice. I shook and shook. Like the flu shivers. It went on for about hour and a half.
I felt nauseous when the shakes stopped, so nibbled on some digestives (75 cals each i believe) and felt a bit better. By 6pm i felt even better, still dizzy and headachy, but much better.
Sam brought me up a small bowl of curry which i ate the rice and sauce.
Curry? You might think that an odd choice of food when feeling ill. But to be fair, everything tastes the same at this stage. Again its the carbs I'm after.
Slept remarkably well!
And woken feeling ok. Haven't got out of bed yet tho!
I don't think i will be running a marathon today but I'm feeling like i could. The euphoria when the nausea etc goes, and you wake to find out how you're feeling following intensive chemo.
I didn't know that! I read something the other day that said its not an easy chemo, but wasn't convinced. Dr Jack said its not the worst chemo you can have, but it is a harsh one, very intensive! No wonder I've been feeling rough.
Oh yes, he also said if my health deteriorated, i.e. my lungs heart or liver were damaged, he may stop one of the cycles (thats 2 doses). Theres no point treating the cancer if i die from something else!
Which has just reminded me of a man i nursed many years ago. Ive got a feeling he may have had lymphoma. He was treated and treated, and he died. I remember seeing Prof Hamblin with his head in his hands in the office and he said to me, 'That man is cancer free and he's just died of exhaustion.'
So i spose thats what Dr Jack means.
The thought of dropping a cycle makes me happy, but then fills me with anguish. Will the lymphoma return?
Oh the joys of life.
You never know whats round the corner. Its best to enjoy your life as much as you can. Thats what i hope to do when i can walk more than 200 yards without coughing, wheezing of having to slow down!
Anyway I've rambled on for far too long. I may write another blog later if i have anything exciting to say, but i doubt that!
Monday 28 April 2014
Sunday 27 April 2014
27.4.14
I spoke too soon.
Ive heard scratching. The rats are back. Ive got it in my head that they're staggering rather than running about. The thought isn't nice. I don't like the idea that they're being killed, but its a necessity. I haven't given them permission to run around my house, so its self defence.
The stench is still here, but not as bad. Bad enough tho. Candles are the order of the day.
Nice day. Phil took me for lunch. Roast lamb, all the trimmings and then raspberry meringue. Coffee to follow and a chocolate mint crisp.
Home for more coffee and more chatting. Luckily Phil can talk for England, the same as me, so theres plenty of conversation.
The rest of the day was given to chillaxing. I hate words like that. I don't know why i used it. I could delete it, but ill throw caution to the wind and keep it in. Does it make me sound young and 'hip'?
Probably not!
So lets go on to the internet. Still intermittent. Mr BT did say my new router would be delivered on the 25th, which was an obvious error. It was only ordered on the 25th. So he promised the saturday 26th but if it didn't arrive then it would definitely be the sunday 27th. I did point out in our country we don't do deliveries on a sunday, but he was having none of it.
He arranged to call me today, sunday, between 3 and 5pm just to check it has arrived and was working well. He was 100% sure it would be here, i was 100% sure it wouldn't be here.
I win!!
He rang and tracked the parcel when i told him off for lying to me.
He assured me, yes ASSURED me it would be here before 6pm, he even arranged to call me to check.
How very strange. It wasn't delivered, and he didn't call!
Maybe tomorrow????
Tomorrow is bloods day before number 7. Followed by lunch with Linda.
I need to turn my mind back to positive. Im feeling trepidation!
Any suggestions on doing this on a postcard please.
Thats the lot for today. I shall tell you all about my lunch tomorrow. I have no doubt there will be photos!
Nighty night.
I spoke too soon.
Ive heard scratching. The rats are back. Ive got it in my head that they're staggering rather than running about. The thought isn't nice. I don't like the idea that they're being killed, but its a necessity. I haven't given them permission to run around my house, so its self defence.
The stench is still here, but not as bad. Bad enough tho. Candles are the order of the day.
Nice day. Phil took me for lunch. Roast lamb, all the trimmings and then raspberry meringue. Coffee to follow and a chocolate mint crisp.
Home for more coffee and more chatting. Luckily Phil can talk for England, the same as me, so theres plenty of conversation.
The rest of the day was given to chillaxing. I hate words like that. I don't know why i used it. I could delete it, but ill throw caution to the wind and keep it in. Does it make me sound young and 'hip'?
Probably not!
So lets go on to the internet. Still intermittent. Mr BT did say my new router would be delivered on the 25th, which was an obvious error. It was only ordered on the 25th. So he promised the saturday 26th but if it didn't arrive then it would definitely be the sunday 27th. I did point out in our country we don't do deliveries on a sunday, but he was having none of it.
He arranged to call me today, sunday, between 3 and 5pm just to check it has arrived and was working well. He was 100% sure it would be here, i was 100% sure it wouldn't be here.
I win!!
He rang and tracked the parcel when i told him off for lying to me.
He assured me, yes ASSURED me it would be here before 6pm, he even arranged to call me to check.
How very strange. It wasn't delivered, and he didn't call!
Maybe tomorrow????
Tomorrow is bloods day before number 7. Followed by lunch with Linda.
I need to turn my mind back to positive. Im feeling trepidation!
Any suggestions on doing this on a postcard please.
Thats the lot for today. I shall tell you all about my lunch tomorrow. I have no doubt there will be photos!
Nighty night.
Saturday 26 April 2014
26.4.14
The day started well and just got better.
Jenni and Linda came round and we had a hot cross bun (from M&S, but not the belgian chocolate ones, they had sold out!) and a coffee in the summer house prior to Steve and Jo picking us up and taking us to a Rockchoir workshop in Lymington.
We arrived early so we visited a cafe called Indulgence. There was about 20 different choices of cake. I had victoria sandwich with my tea and it was sooooo good. Very fluffy. Then back to the community centre for a singsong. It was heaving. I thought there'd be about 30 of us like the last workshop. There must have been about 200 of us.
A lot of people watching was practiced! I do like a bit of people watching.
The thing i noticed was the amount of hair in the room! All the different styles and colours. I of course wore wiggy.
We started the workshop with Bring Him Home from Les Mis.
I knew the song but had never looked at the lyrics before. I had looked at them before the girls arrived.
I sobbed!
How on earth was i gonna be able to sing that without letting the side down and blubbing like a baby?
I desensitised myself. I lay in the bath and listened to it over and over and hey presto, i could sing it without squawking.
So we started the song. It was so beautiful. The men in the bass section were separate from us bass ladies, or as we were called tenor ladies (tena ladies).
It sounded so good. And no tears, well not from me anyway.
There was some confusion with a section of 'our part' so to say chemo brain made life difficult is an understatement.
But when we sang it all together at the end, it was moving, very moving.
Time for afternoon tea.
Then song number two.
America from West Side Story. We didn't have so much time for this one, but this song was easier.
We had to sing it Peurto Rico Style, which was fun.
Again, it sounded lovely.
I really enjoyed the day, but it was very tiring.
Back in the car for the journey home. We sang some Rockchoir songs that we all know and love, loudly and with the windows open, and in the car park traffic jam, so everyone could hear. And i did it bald stylee. I had a few looks, but it all adds to the fun.
Then home to relax for the evening with a bit of Britains got Talent.
Its funny. As much as i looked forward to today, and i enjoyed it, i almost feel resentful that i wasn't able to do gardening and chores. And tomorrows the same.
Phil, my ex, is round at 12 tomorrow to take me for lunch at the Kings Arms. Im looking forward to seeing him, and really looking forward to lunch at the Kings Arms, its one of my fave places, but again, its weird cos i like my weekend to do a bit of gardening and pottering about.
Theres no pleasing some people!
I have become very contrary.
And the last thing to mention before bed is the rats!
The stench has subsided, which is good before next tuesday (chemo day). And I've not heard any scratching this evening.
Hip hip hooray!
The day started well and just got better.
Jenni and Linda came round and we had a hot cross bun (from M&S, but not the belgian chocolate ones, they had sold out!) and a coffee in the summer house prior to Steve and Jo picking us up and taking us to a Rockchoir workshop in Lymington.
We arrived early so we visited a cafe called Indulgence. There was about 20 different choices of cake. I had victoria sandwich with my tea and it was sooooo good. Very fluffy. Then back to the community centre for a singsong. It was heaving. I thought there'd be about 30 of us like the last workshop. There must have been about 200 of us.
A lot of people watching was practiced! I do like a bit of people watching.
The thing i noticed was the amount of hair in the room! All the different styles and colours. I of course wore wiggy.
We started the workshop with Bring Him Home from Les Mis.
I knew the song but had never looked at the lyrics before. I had looked at them before the girls arrived.
I sobbed!
How on earth was i gonna be able to sing that without letting the side down and blubbing like a baby?
I desensitised myself. I lay in the bath and listened to it over and over and hey presto, i could sing it without squawking.
So we started the song. It was so beautiful. The men in the bass section were separate from us bass ladies, or as we were called tenor ladies (tena ladies).
It sounded so good. And no tears, well not from me anyway.
There was some confusion with a section of 'our part' so to say chemo brain made life difficult is an understatement.
But when we sang it all together at the end, it was moving, very moving.
Time for afternoon tea.
Then song number two.
America from West Side Story. We didn't have so much time for this one, but this song was easier.
We had to sing it Peurto Rico Style, which was fun.
Again, it sounded lovely.
I really enjoyed the day, but it was very tiring.
Back in the car for the journey home. We sang some Rockchoir songs that we all know and love, loudly and with the windows open, and in the car park traffic jam, so everyone could hear. And i did it bald stylee. I had a few looks, but it all adds to the fun.
Then home to relax for the evening with a bit of Britains got Talent.
Its funny. As much as i looked forward to today, and i enjoyed it, i almost feel resentful that i wasn't able to do gardening and chores. And tomorrows the same.
Phil, my ex, is round at 12 tomorrow to take me for lunch at the Kings Arms. Im looking forward to seeing him, and really looking forward to lunch at the Kings Arms, its one of my fave places, but again, its weird cos i like my weekend to do a bit of gardening and pottering about.
Theres no pleasing some people!
I have become very contrary.
And the last thing to mention before bed is the rats!
The stench has subsided, which is good before next tuesday (chemo day). And I've not heard any scratching this evening.
Hip hip hooray!
Friday 25 April 2014
25.4.14
Yay!!!
An eventful day.
Had an appointment with a solicitor this morning.
I always feel when i meet people, they are looking at me and thinking, 'Wig' or 'baldy'!
I think i must look sheepish! And i don't mean woolly.
Then it was nice to have Karen round for a coffee and catchup. She bought me some tulips and a carrot cake, which was one of the nicest carrot cakes I've tried. Bless her heart.
Then about 3 hours on and off talking to BT regarding my failing internet.
'Ve have tested the line and there is nussing wrong vis them. We have switched you to anusser channel and you vill find you will not keep dropping your internet.'
Sorry, thats sposed to be the accent of the BT chap, but it sounds more German as i read it out loud!
10 minutes later, and no broadband, i rang them again.
Same tests again and the same suggestion of changing to another channel without any problems on the line.
'But you must leave it for 24hours before you can see the difference'
I complain it didn't work last time and catch him out cos i rang yesterday - 24 hours ago!
They're absolutely full of cr*p aren't they?
'Ma'am the problem is with your device'
What all 5 devices in the house are faulty?
I ask, could it be a problem with the router or hub?
No Ma'am. I have done the diagnostic tests and everything with BT is fine and operational.
So tomorrow they're sending me a new hub or router or both, who knows!
I have no faith.
Then its time for some retail therapy with Linda. I need some bigger clothes for my bigger body! Damn steroids. I know its the steroids but I'm desperate to lose this 'blobbiness'.
In the meantime, larger clothes.
We amble round M&S after a coffee and a sausage and onion toastie.
The bra lady fits me with 2 mediocre but correct size brassieres.
Im deposited in a changing room with Linda on sentry duty whilst i try on most of the clothes in the shop. As i pull off my top, my wig flies off! I stand in a fit of giggles for a short while and pop my head round the door to entertain Linda, who then joins in with the giggles. I try on a dress and as i pull it down round my ample bosom i find the clothes tag wedged behind my ear.
Oh thats what hair is for, to stop an embarrassing wardrobe malfunction. Again Linda is made aware of the error.
I find a dress and 2 tops will suffice out of the huge pile of garments.
I need another hat. The red beret that i wear to keep my bonce warm is ok but looks ridiculous. The blue bed beret (home made) looks even more ridiculous. The wide brimmed sunhat is lovely but only suitable for when we have sun!!!
Armed with more hats than a milliners shop i approach a mirror. And they're few and far between these days! Im always moaning at the mo!
I try them on top of wiggy. They don't fit right. And I'm thinking its to wear instead of the wig.
Now, how to remove wiggy and try on the hats without frightening small children.
We got a bit of a routine going, Linda and I.
Linda whips the wig off, i put the hat on.
Linda whips the hat off, i put the next one on.
A couple get stuck on my head and Linda, not realising, is tugging. Its like something out of a carry on film. Eventually we find one that doesn't make me look like Freddie parrot face Davies. My god, where did that come from? A blast from the past!
Haha, I've just googled Freddie Davies!!!
But we managed it. A half hour full of raucous laughter.
And so, home!
We amble off towards the car, with bags of clothes, bras, hats and food (no surprise there!). The weather had turned from a wet miserable day to sunshine and blue skies. I felt warm in my thick coat and wig.
'Linda', i said. As she looked at me, i whipped wiggy off to reveal to the world my bristly head!
Linda nearly wet herself!
What the heck!
I drive home, trying to catch eye contact with other drivers or pedestrians! I love stopping at lights and looking at the driver in the vehicle next to me. They usually have a double take! People seem so shocked to see a bald woman, even with all the cancer and chemo in the world. Im gonna go bald more often, it was really good fun.
Yes, i have the shock factor!
Yay!!!
An eventful day.
Had an appointment with a solicitor this morning.
I always feel when i meet people, they are looking at me and thinking, 'Wig' or 'baldy'!
I think i must look sheepish! And i don't mean woolly.
Then it was nice to have Karen round for a coffee and catchup. She bought me some tulips and a carrot cake, which was one of the nicest carrot cakes I've tried. Bless her heart.
Then about 3 hours on and off talking to BT regarding my failing internet.
'Ve have tested the line and there is nussing wrong vis them. We have switched you to anusser channel and you vill find you will not keep dropping your internet.'
Sorry, thats sposed to be the accent of the BT chap, but it sounds more German as i read it out loud!
10 minutes later, and no broadband, i rang them again.
Same tests again and the same suggestion of changing to another channel without any problems on the line.
'But you must leave it for 24hours before you can see the difference'
I complain it didn't work last time and catch him out cos i rang yesterday - 24 hours ago!
They're absolutely full of cr*p aren't they?
'Ma'am the problem is with your device'
What all 5 devices in the house are faulty?
I ask, could it be a problem with the router or hub?
No Ma'am. I have done the diagnostic tests and everything with BT is fine and operational.
So tomorrow they're sending me a new hub or router or both, who knows!
I have no faith.
Then its time for some retail therapy with Linda. I need some bigger clothes for my bigger body! Damn steroids. I know its the steroids but I'm desperate to lose this 'blobbiness'.
In the meantime, larger clothes.
We amble round M&S after a coffee and a sausage and onion toastie.
The bra lady fits me with 2 mediocre but correct size brassieres.
Im deposited in a changing room with Linda on sentry duty whilst i try on most of the clothes in the shop. As i pull off my top, my wig flies off! I stand in a fit of giggles for a short while and pop my head round the door to entertain Linda, who then joins in with the giggles. I try on a dress and as i pull it down round my ample bosom i find the clothes tag wedged behind my ear.
Oh thats what hair is for, to stop an embarrassing wardrobe malfunction. Again Linda is made aware of the error.
I find a dress and 2 tops will suffice out of the huge pile of garments.
I need another hat. The red beret that i wear to keep my bonce warm is ok but looks ridiculous. The blue bed beret (home made) looks even more ridiculous. The wide brimmed sunhat is lovely but only suitable for when we have sun!!!
Armed with more hats than a milliners shop i approach a mirror. And they're few and far between these days! Im always moaning at the mo!
I try them on top of wiggy. They don't fit right. And I'm thinking its to wear instead of the wig.
Now, how to remove wiggy and try on the hats without frightening small children.
We got a bit of a routine going, Linda and I.
Linda whips the wig off, i put the hat on.
Linda whips the hat off, i put the next one on.
A couple get stuck on my head and Linda, not realising, is tugging. Its like something out of a carry on film. Eventually we find one that doesn't make me look like Freddie parrot face Davies. My god, where did that come from? A blast from the past!
Haha, I've just googled Freddie Davies!!!
I do look like Freddie parrot face Davies!
Then to put wiggy back on, not quite as easy as putting a hat on.But we managed it. A half hour full of raucous laughter.
And so, home!
We amble off towards the car, with bags of clothes, bras, hats and food (no surprise there!). The weather had turned from a wet miserable day to sunshine and blue skies. I felt warm in my thick coat and wig.
'Linda', i said. As she looked at me, i whipped wiggy off to reveal to the world my bristly head!
Linda nearly wet herself!
What the heck!
I drive home, trying to catch eye contact with other drivers or pedestrians! I love stopping at lights and looking at the driver in the vehicle next to me. They usually have a double take! People seem so shocked to see a bald woman, even with all the cancer and chemo in the world. Im gonna go bald more often, it was really good fun.
Yes, i have the shock factor!
Thursday 24 April 2014
24.4.14
By now i should be feeling better! But I'm not. I don't understand it. Usually week 1 I'm rough and week 2 I'm better. This time its been the other way round. How strange!
Today I've cried. Well, this afternoon really. I think its the steroid 'low' cos theres no real reason for it, except for feeling sorry for myself. But i think i had the steroid 'low' the other day? Two steroid 'low' days? Things are really different this time.
Like i said before, just when you think you know where you are, it changes.
Im headachy still, and very mildly nauseous. Ive had enough at the mo. Im trying to think of ways that i can stop having chemo. But of course, theres no way. Except for a miracle.
'We read your scans wrong. You are a grade 1A so we can stop chemo now!'
How wonderful would that be.
I was told at the beginning that it had only just slightly spread so i was only going to have 3 cycles (6 doses). That would have been done now. All finished. But of course, it had spread more so i have to have 6 cycles.
How about if i promise to eat healthily, exercise, never eat chocolate, and be nice to people?
Could i stop chemo now?
I have to face facts. Ive got another 6 doses, another 11 weeks.
I should stop whinging and get on with it. After all, there are people worse off than me.
I see that brave young man Stephen Sutton is still fighting his fight. Puts me to shame.
On to something lighter.
I went to collect my car today. The alarm kept going off and they decided it was the boot latch causing the problem. And there were a few 'chips' needing painting, as agreed when i brought the car about 3 months ago.
I put a bit of pressure on them. I told them i was having chemo and only had a few days when i felt well enough to do my chores, or to enjoy my time and go out. Completely true, not a lie.
They've had the car since tuesday morning. Today is thursday and they probably would have kept it another day if i hadn't had put pressure on.
So i went to collect the car with Sam and his mate, Matt.
The boss was called as they handed me the keys.
'We haven't done the paint job! We didn't know exactly what you wanted painting! We think it may be the door edges?'
You'd have thought they would be in possession of a telephone in this day and age. Its a piece of equipment where you can 'call' the person concerned and ask them a question!
A miscommunication was blamed. Nigels name was mentioned! He hadn't written it in the notes, which I'm not surprised at.
I had a moan, Sam had a bigger moan.
So what they're gonna do, is collect the car next week from my home, paint the agreed areas, door edges and 'chips' at the back by the boot (getting more painted than i was expecting!), clean the car, put in some petrol (i hope they realise its a diesel engine!) and return it to my home.
Cant ask for better than that really.
Called round to see Linda for a quick cup of tea this afternoon. Sat in the garden in the sun with my hat on.
I grizzled and grizzled!
'I just wanna feel good again.'
She puts up with a lot from me. She has enough other problems without me dragging her down.
Then back home for Jenni's visit.
She showed me the article in the Echo of her 'haircut' for Cancer Research.
Grizzled a bit more!
So she laughed at me and took a photo of me in my silly hat.
I think i recovered from my steroid 'low' then.
Been a brave girl since. Watched Eastenders without crying!
I shall take myself off to bed now and hope the rats keep the noise down this evening.
So its goodnight from a happier, but very thirsty (why am i always thirsty at night time?) me.
By now i should be feeling better! But I'm not. I don't understand it. Usually week 1 I'm rough and week 2 I'm better. This time its been the other way round. How strange!
Today I've cried. Well, this afternoon really. I think its the steroid 'low' cos theres no real reason for it, except for feeling sorry for myself. But i think i had the steroid 'low' the other day? Two steroid 'low' days? Things are really different this time.
Like i said before, just when you think you know where you are, it changes.
Im headachy still, and very mildly nauseous. Ive had enough at the mo. Im trying to think of ways that i can stop having chemo. But of course, theres no way. Except for a miracle.
'We read your scans wrong. You are a grade 1A so we can stop chemo now!'
How wonderful would that be.
I was told at the beginning that it had only just slightly spread so i was only going to have 3 cycles (6 doses). That would have been done now. All finished. But of course, it had spread more so i have to have 6 cycles.
How about if i promise to eat healthily, exercise, never eat chocolate, and be nice to people?
Could i stop chemo now?
I have to face facts. Ive got another 6 doses, another 11 weeks.
I should stop whinging and get on with it. After all, there are people worse off than me.
I see that brave young man Stephen Sutton is still fighting his fight. Puts me to shame.
On to something lighter.
I went to collect my car today. The alarm kept going off and they decided it was the boot latch causing the problem. And there were a few 'chips' needing painting, as agreed when i brought the car about 3 months ago.
I put a bit of pressure on them. I told them i was having chemo and only had a few days when i felt well enough to do my chores, or to enjoy my time and go out. Completely true, not a lie.
They've had the car since tuesday morning. Today is thursday and they probably would have kept it another day if i hadn't had put pressure on.
So i went to collect the car with Sam and his mate, Matt.
The boss was called as they handed me the keys.
'We haven't done the paint job! We didn't know exactly what you wanted painting! We think it may be the door edges?'
You'd have thought they would be in possession of a telephone in this day and age. Its a piece of equipment where you can 'call' the person concerned and ask them a question!
A miscommunication was blamed. Nigels name was mentioned! He hadn't written it in the notes, which I'm not surprised at.
I had a moan, Sam had a bigger moan.
So what they're gonna do, is collect the car next week from my home, paint the agreed areas, door edges and 'chips' at the back by the boot (getting more painted than i was expecting!), clean the car, put in some petrol (i hope they realise its a diesel engine!) and return it to my home.
Cant ask for better than that really.
Called round to see Linda for a quick cup of tea this afternoon. Sat in the garden in the sun with my hat on.
I grizzled and grizzled!
'I just wanna feel good again.'
She puts up with a lot from me. She has enough other problems without me dragging her down.
Then back home for Jenni's visit.
She showed me the article in the Echo of her 'haircut' for Cancer Research.
Grizzled a bit more!
So she laughed at me and took a photo of me in my silly hat.
I think i recovered from my steroid 'low' then.
Been a brave girl since. Watched Eastenders without crying!
I shall take myself off to bed now and hope the rats keep the noise down this evening.
So its goodnight from a happier, but very thirsty (why am i always thirsty at night time?) me.
Wednesday 23 April 2014
23.4.14
Oh bugger!
I fell asleep again. Every evening from about 10pm onwards, i fall asleep and then when i wake I'm unable to go back to sleep.
So its gone 11pm and i haven't written my scintillating blog!
So here it is. Written whilst I'm totally and annoyingly wide awake.
Ive noticed there's a lot of psychological stuff going on.
I said a few days ago about how i feel like i constantly have a cannula being put in. Its like an anxiety about having another one put in. I have to have at least another 6 so i better get used to it. Its like a nerve type pain, and i think its purely psychological. It aches. I don't know if its cos of the bruising, or if my veins are affected by the poison, but whatever it is, i don't like it.
My bathroom has become part of my 'chemo nightmare'. It seems to have a smell about it that i recognise as chemo. Not a nasty smell, not a body smell, but a slightly perfumed smell. I think its my normal bathroom cleanliness smell, but i associate it with chemo and a negative feeling. Ive tried today to put a reed diffuser in there to mask the smell, but the reed diffuser is making me feel nauseous so ill have to put it in the spare room till I'm over my psychological nauseating smell problem.
I find it difficult to swallow when i have to take medicine now. Whatever it is, steroid, antacid, panadol, it just sits in the back of my mouth along with a mouthful of water that is unable to go over the edge.
But the biggest psychological thing........the thought of the hospital!
Just thinking of parking in the carpark, or dragging myself through the walkway to the Dorset Cancer Centre. The thought of going into my chemo room and putting my arm into a bucket of hot water to encourage my vein to 'pop' out. The insertion of the cannula. The thought of having an IV injection of anti emetics, steroids, chemo drugs or anything else to be quite frank with you, fills me with dread. It is such a powerful feeling. It makes me feel headachy and nauseous. Really!
How powerful is that?
Im wondering if i should have hypnotherapy to lessen the stress.
I need to try and associate the above negativities, positively!
I think that will be the job for tomorrow. I shall google it. I shall find a way to stop thinking forward and pooping myself!
Otherwise its been an ok day.
The power to the garage was lost and my freezer started to defrost. Luckily, it being the dog food freezer mainly, and there not being much in it, it wasn't a big problem.
A few chicken livers and hearts defrosted, and there was chicken necks galore for my 2 girlies! It was a win win situation for them.
Its been sorted now, hallelujah.
And the rat problem was addressed. Wessex Water attended my manhole cover! More poison was applied (is that another psychological problem i wonder! Poison!) in the hope that the 'clever animals' will get fed up with all the deathly poison and move to another house????
Surely the poison will kill them (oh psychological stuff get out of my head!) so they will be unable to move anywhere. They will sit and rot under my floorboards, making me even more nauseous!
Anyway, Mr Wessex Ratman rang my doorbell at about 7.30 whilst i was mopping out my defrosting freezer. I rushed to the door in my dressing gown with the doggie footprints, and i mean muddy ones, not a pattern on the gown, and a delightful turquoise hand knitted oversized and partly rolled up woolly hat, that i keep on my bed for when my head is cold.
He explained the plan of action and rentokil was mentioned to be called out (result) and he apologised for the job dragging out considering he realised i was having chemo (i had used the chemo card to get them to sort the problem quicker, you don't need bluebottles flying round your kitchen when you're trying to allay any bacteria). I smiled at him, aware of how ridiculous i was looking, and pointed to my stylish titfer (hat!), 'Yes, hence this little darling!!!'
He also had a woolly titfer!
'Are you having chemo too?' i asked.
We both laughed! It was kind of a nice moment.
Oh bugger!
I fell asleep again. Every evening from about 10pm onwards, i fall asleep and then when i wake I'm unable to go back to sleep.
So its gone 11pm and i haven't written my scintillating blog!
So here it is. Written whilst I'm totally and annoyingly wide awake.
Ive noticed there's a lot of psychological stuff going on.
I said a few days ago about how i feel like i constantly have a cannula being put in. Its like an anxiety about having another one put in. I have to have at least another 6 so i better get used to it. Its like a nerve type pain, and i think its purely psychological. It aches. I don't know if its cos of the bruising, or if my veins are affected by the poison, but whatever it is, i don't like it.
My bathroom has become part of my 'chemo nightmare'. It seems to have a smell about it that i recognise as chemo. Not a nasty smell, not a body smell, but a slightly perfumed smell. I think its my normal bathroom cleanliness smell, but i associate it with chemo and a negative feeling. Ive tried today to put a reed diffuser in there to mask the smell, but the reed diffuser is making me feel nauseous so ill have to put it in the spare room till I'm over my psychological nauseating smell problem.
I find it difficult to swallow when i have to take medicine now. Whatever it is, steroid, antacid, panadol, it just sits in the back of my mouth along with a mouthful of water that is unable to go over the edge.
But the biggest psychological thing........the thought of the hospital!
Just thinking of parking in the carpark, or dragging myself through the walkway to the Dorset Cancer Centre. The thought of going into my chemo room and putting my arm into a bucket of hot water to encourage my vein to 'pop' out. The insertion of the cannula. The thought of having an IV injection of anti emetics, steroids, chemo drugs or anything else to be quite frank with you, fills me with dread. It is such a powerful feeling. It makes me feel headachy and nauseous. Really!
How powerful is that?
Im wondering if i should have hypnotherapy to lessen the stress.
I need to try and associate the above negativities, positively!
I think that will be the job for tomorrow. I shall google it. I shall find a way to stop thinking forward and pooping myself!
Otherwise its been an ok day.
The power to the garage was lost and my freezer started to defrost. Luckily, it being the dog food freezer mainly, and there not being much in it, it wasn't a big problem.
A few chicken livers and hearts defrosted, and there was chicken necks galore for my 2 girlies! It was a win win situation for them.
Its been sorted now, hallelujah.
And the rat problem was addressed. Wessex Water attended my manhole cover! More poison was applied (is that another psychological problem i wonder! Poison!) in the hope that the 'clever animals' will get fed up with all the deathly poison and move to another house????
Surely the poison will kill them (oh psychological stuff get out of my head!) so they will be unable to move anywhere. They will sit and rot under my floorboards, making me even more nauseous!
Anyway, Mr Wessex Ratman rang my doorbell at about 7.30 whilst i was mopping out my defrosting freezer. I rushed to the door in my dressing gown with the doggie footprints, and i mean muddy ones, not a pattern on the gown, and a delightful turquoise hand knitted oversized and partly rolled up woolly hat, that i keep on my bed for when my head is cold.
He explained the plan of action and rentokil was mentioned to be called out (result) and he apologised for the job dragging out considering he realised i was having chemo (i had used the chemo card to get them to sort the problem quicker, you don't need bluebottles flying round your kitchen when you're trying to allay any bacteria). I smiled at him, aware of how ridiculous i was looking, and pointed to my stylish titfer (hat!), 'Yes, hence this little darling!!!'
He also had a woolly titfer!
'Are you having chemo too?' i asked.
We both laughed! It was kind of a nice moment.
Tuesday 22 April 2014
22.4.14
Id really love to say I've had a wonderful day. It hasn't been bad. Im achey, headachy, indigestion, bloated, sore tongue. You know, the usual old crap. But it could have been worse.
Ive just read something on Facebook about a teenager called Stephen who has incurable cancer. He's about to get his wings, any day. It certainly puts things in perspective.
Stephen's story
Its so sad.
Its sad what I've been through, but what he's been through, and what he's achieved....... it amazes me. The courage and the strength. Obviously far more than i have - moaning about being achey and bloated.
I hope his passing is comfortable and pain free and i hope there is a better place to go to where he will be adored and admired, and his skills put to good use.
In case you're wondering, I'm not still in 'grizzling' mode! Yes its sad to hear about people like Stephen, but i have my own battle and he gives me the inspiration to do some good of my own. Don't ask me what, but i want to do something.
Any suggestions greatly received.
Im not gonna bungy or parachute.
I know i could do an eatathon! Or an indigestionathon! I could be sponsored for the amount of inches i can put on round my swollen tummy. That would definitely be a good earner!
I shall have to put my thinking cap on and think up something good.
Maybe a singathon? Ooh that would be good. Leave it with me.
Anyway, what else have i done today?
Ive taken my car in to be fixed. The car alarm keeps going off at 2am. Seems it could be the boot catch. And of course I'm still waiting for some 'chips' to be painted as was requested when i brought the car months ago. Fancy that, Nigel forgot to order the paint!!! I saw Nigel, the hot salesman, across a crowded shop floor. He's very pleasing to the eye. I did manage to turn him to jelly when i rang 20 minutes ago to see if the car was ready. There was a bit of stuttering and apologising. Him, not me!
Should be done tomorrow, fingers crossed.
Well i think thats all to hold you captive with! I promise you one day i will have something really scintillating to fascinate you with.
In the meantime.
I was going to buy a book on hair loss, but the pages kept falling out!
Id really love to say I've had a wonderful day. It hasn't been bad. Im achey, headachy, indigestion, bloated, sore tongue. You know, the usual old crap. But it could have been worse.
Ive just read something on Facebook about a teenager called Stephen who has incurable cancer. He's about to get his wings, any day. It certainly puts things in perspective.
Stephen's story
Its so sad.
Its sad what I've been through, but what he's been through, and what he's achieved....... it amazes me. The courage and the strength. Obviously far more than i have - moaning about being achey and bloated.
I hope his passing is comfortable and pain free and i hope there is a better place to go to where he will be adored and admired, and his skills put to good use.
In case you're wondering, I'm not still in 'grizzling' mode! Yes its sad to hear about people like Stephen, but i have my own battle and he gives me the inspiration to do some good of my own. Don't ask me what, but i want to do something.
Any suggestions greatly received.
Im not gonna bungy or parachute.
I know i could do an eatathon! Or an indigestionathon! I could be sponsored for the amount of inches i can put on round my swollen tummy. That would definitely be a good earner!
I shall have to put my thinking cap on and think up something good.
Maybe a singathon? Ooh that would be good. Leave it with me.
Anyway, what else have i done today?
Ive taken my car in to be fixed. The car alarm keeps going off at 2am. Seems it could be the boot catch. And of course I'm still waiting for some 'chips' to be painted as was requested when i brought the car months ago. Fancy that, Nigel forgot to order the paint!!! I saw Nigel, the hot salesman, across a crowded shop floor. He's very pleasing to the eye. I did manage to turn him to jelly when i rang 20 minutes ago to see if the car was ready. There was a bit of stuttering and apologising. Him, not me!
Should be done tomorrow, fingers crossed.
Well i think thats all to hold you captive with! I promise you one day i will have something really scintillating to fascinate you with.
In the meantime.
I was going to buy a book on hair loss, but the pages kept falling out!
Monday 21 April 2014
21.4.14
I am taking this opportunity to write my blog now, whilst I'm not sobbing! Don't feel sorry for me cos its not proper tears. Im a fraud. I don't feel sad particularly. I just have this inability to control myself, the same as every day 6 of chemo.
I cried just now about a little boy in Africa who was going blind, it was an ad on TV.
I then cried about a lost dog on Facebook.
And i have no doubt i shall cry a few more times today. I suppose it gives me something to do on a boring day.
It shouldn't be a boring day. The sun is shining. But I'm feeling rough today. Not hideously so, so I'm not crying about that, although I'm sure i'll have a go later!!!
My bones are aching today, as is my throat/digestive system. Same old, same old!
But quite surprisingly, I'm not eating myself stupid today! I think i have some underlying nausea. Sometimes all the symptoms mingle and you're not sure what you're feeling.
One weird thing tho....
Ive noticed about day 5 or 6 i feel like i have a cannula being put into a vein in my arm, or taken out, or even just in situ. It aches, and i really don't like it.
As you can see from my photo, my arm is bruised. I find when the nurses take the cannulas out if they don't press for long enough (or let me do it!) on the site, i get bruised. Its not rocket science.
I remember a young houseman at Boscombe Hospital many years ago, (1980) once telling me off for removing the cottonwool too soon off a blood test site.
'Have you never heard of vascular necrosis?'
I get his point, but he was a bit of an arse if i remember correctly. Not one of the doctors with charisma, looks, or a self induced idea of his own godliness.
He's probably a high flying haematologist now. Bet he wouldn't bruise a poor chemo patient!
I am taking this opportunity to write my blog now, whilst I'm not sobbing! Don't feel sorry for me cos its not proper tears. Im a fraud. I don't feel sad particularly. I just have this inability to control myself, the same as every day 6 of chemo.
I cried just now about a little boy in Africa who was going blind, it was an ad on TV.
I then cried about a lost dog on Facebook.
And i have no doubt i shall cry a few more times today. I suppose it gives me something to do on a boring day.
It shouldn't be a boring day. The sun is shining. But I'm feeling rough today. Not hideously so, so I'm not crying about that, although I'm sure i'll have a go later!!!
My bones are aching today, as is my throat/digestive system. Same old, same old!
But quite surprisingly, I'm not eating myself stupid today! I think i have some underlying nausea. Sometimes all the symptoms mingle and you're not sure what you're feeling.
One weird thing tho....
Ive noticed about day 5 or 6 i feel like i have a cannula being put into a vein in my arm, or taken out, or even just in situ. It aches, and i really don't like it.
As you can see from my photo, my arm is bruised. I find when the nurses take the cannulas out if they don't press for long enough (or let me do it!) on the site, i get bruised. Its not rocket science.
I remember a young houseman at Boscombe Hospital many years ago, (1980) once telling me off for removing the cottonwool too soon off a blood test site.
'Have you never heard of vascular necrosis?'
I get his point, but he was a bit of an arse if i remember correctly. Not one of the doctors with charisma, looks, or a self induced idea of his own godliness.
He's probably a high flying haematologist now. Bet he wouldn't bruise a poor chemo patient!
I really shouldn't complain about feeling bad. Ive felt so good this time. Number 6 has been kind to me. Ive got to expect some discomfort, haven't I?
Anyway, I'm gonna go now. Im sure you've had enough of my grizzling and complaining, i know i have! I think its time i pull myself together. At the end of the day, and i feel strange saying this, but I'm gonna say it anyway, i have my health!!
Ha ha thats a funny thing to say isn't it. I don't have cancer, so what am i complaining about?
Oh god, thats made me emotional again!
Sunday 20 April 2014
20.4.14
This Easter malarky's not much to write home about is it?
Its been raining, so the dogs weren't walked, so they've been hyper!
Ive lost my taste buds, so my plan of eating myself stupid hasn't worked as well as i had hoped. Ive still eaten myself stupid but i haven't tasted the food.
My tongue is sore.
I discontinued the steroids yesterday afternoon so today i have gone down hill, just slightly. I have my usual 'drain pipe down the throat' feeling. Not too bad, but its there to grind me down a bit, and joy of joys, tomorrow is gonna be one humdinger!!!
Yes the come down from steroids usually leads to a day of blubbing, which leads to a red blocked nose and a headache!
Im hoping the taste buds will recover (fat chance - excuse the pun) tomorrow so at least if I'm emotional i can eat chocolate at the same time!
Well you're lucky. I have nothing else to say!
Tomorrow i will fill my blog with exciting and interesting tales of something exciting and interesting, either that or i will tell you of my sore tongue and my indigestion!
Good night one and all.
This Easter malarky's not much to write home about is it?
Its been raining, so the dogs weren't walked, so they've been hyper!
Ive lost my taste buds, so my plan of eating myself stupid hasn't worked as well as i had hoped. Ive still eaten myself stupid but i haven't tasted the food.
My tongue is sore.
I discontinued the steroids yesterday afternoon so today i have gone down hill, just slightly. I have my usual 'drain pipe down the throat' feeling. Not too bad, but its there to grind me down a bit, and joy of joys, tomorrow is gonna be one humdinger!!!
Yes the come down from steroids usually leads to a day of blubbing, which leads to a red blocked nose and a headache!
Im hoping the taste buds will recover (fat chance - excuse the pun) tomorrow so at least if I'm emotional i can eat chocolate at the same time!
Well you're lucky. I have nothing else to say!
Tomorrow i will fill my blog with exciting and interesting tales of something exciting and interesting, either that or i will tell you of my sore tongue and my indigestion!
Good night one and all.
Friday 18 April 2014
19.4.14
Ive been laying here deliberating.
How did i get here? The cancer thing.
When i was younger i decided many things were bad for me.
I never used aerosols. I changed to using the crystal deodorant, i lectured my sons about roll ons etc, if i used air freshener i would take a deep breath, spray and close the door quickly.
I used toiletries with the least nasty chemicals, hair dyes from the health shop with less nasty stuff.
I don't smoke, i drink very little. I do however have a good appetite, too good hence the constant 'cutting down'.
Is that what caused me to get cancer?
My birth mother (i was adopted) had a breast lump removed pre menopause and i believe she's been cancer free ever since. I don't have contact with her but I'm sure my cousin would tell me if it came back.
Is it my laptop that sits on my lap regularly, thats the area where it started?
The mind boggles. Maybe theres no reason.
My lovely mum had bowel cancer and liver cancer, not sure which was the primary, i would think bowel. But she had a healthy diet, and she never drank alcohol or smoked.
What is it thats causing all this cancer?
I read some research that said it was our lifestyles but the main reason is age.
My birth mother had it at 48 ish and i have it at 53.
I will never know the answer.
Im just glad its gone and hope it stays gone.
The chemo. Its a strange one. Its not sposed to be nice, and its not. But at times it surprises me how its not too bad. Other times not so good. But you seem to get in a bit of a routine.
The worst bit for me is having it. Not cos it makes me feel ill there and then. Its a psychological thing with me.
Going to the hospital itself makes me feel nauseous, very mildly, but nauseous all the same.
The moment i get there, i am desperate to leave, and yet me and Linda make the best of it. We take a picnic. We make plans together of things we'll do during chemo and after. We order things on line. We laugh and joke.
The next negative is the cannula. You do get used to them, and i never had a real problem with needles. I don't like them but it has to be done. As soon as its in i feel like a prisoner. I can't move my arm. I just sit there with a horrid feeling - Get it out!!!
Then the drugs. The anti emetic to stop me feeling sick. I have to have it, it works for me. But as it goes in i hate it. I have to wait for an hour for that and the oral anti emetic that i have at the same time to work. So i sit with saline (salt water) dripping in to me. Then hydrocortisone, again, yuk, but its better than the IV dexamethasone (this in tablet form is what keeps me feeling good for 5 days after. My life savers!). Then the 4 nasty drugs.
Doxorubicin
Bleomycin
Vincristine
Dacarbazine
Nasty strong poisons that all have different effects. But they've saved my life!!!!
Dr Jack told me if i didn't have the chemo, id be dead in 2 years! He's such a sweet talker.
Having the first 3 of these is fairly quick, which suits me, but the fourth one takes a couple of hours.
Ive started to wake early on chemo day specially so i can doze through this last one to make the time go faster. Its worked a couple of times. And usually, bless her heart, Linda rubs my feet.
I really can't tell you the worth of that girl. I couldn't have done it with out her, I CANT do it without her. Not just cos she rubs my feet. She's gone over and above anything i would ever expect any friend to do, and i will be forever in her debt. Her husband Ian, and Kerrie and Luke also need mentioning here, cos she's put me first so many times. And they have to put up with the effect all my worries must have had on her.
So when the last lot of crap has gone into me, i have a quick bit of saline again to flush everything through.
Then the cannulas removed. I feel like singing when this happens. Its such an amazing feeling. I don't even care how 'roughly' its removed. Not that they remove it roughly, but pulling at the tape that sticks it to me. I would even just pull it out, thats how desperate i feel to get the bugger out.
I have an injection of pegfilgastrim which gets my white cells topped up, and then i can escape.
I hate the journey home, again psychological, cos i don't know if I'm gonna be laughing and joking, or deadly silent, feeling rough.
As soon as I'm home, i hardly speak to Linda or my Sam who's waiting at home, having hoovered and tidied, bless him.
I go to my room and get in bed and wait to see what happens.
This last one has been quite good compared to about 4 others.
I so hope it stays like this till the end. It would make life a lot easier to cope with.
There are many little symptoms which are really irritating and not nice, but i can cope with them. Ive mentioned them before, but a quick list, just so they're all on this blog.
Nausea - fairly mild most of the time.
Headache, dizziness, 'spaced out'.
Constipation and wind!!!
Indigestion.
Mucositis where the digestive tract is irritated and inflamed. Really horrid this one. Sore tongue, sore throat and tummy. Gaviscon helps a bit.
Memory loss and stupidity!!! This one is frustrating, but a bit of fun at times. I have the mickey taken regularly!
Hair loss!! Also fun. Ive quite enjoyed the transformation, but I'm looking forward to not wearing silly hats.
Emotions. I believe it to be the steroids. I can cry for no reason. Usually its on the monday, day 7. Ive usually finished the steroids by sunday morning, so monday i let rip! I don't feel sad. Chris and Sam usually take the mickey out of me, which actually helps and makes me laugh at the same time.
Im sure there are other symptoms, but i can't remember!!
By day 8 I have the switch flick moment when about 10 in the morning i just feel wonderful. Its weird. Then i tend to overdo things until the next chemo!
And I'm halfway there. Only 6 more doses and its done, and hopefully done for good. I have to have regular check ups, and my worry is, i won't know if its coming back. Everyone else has nodes in the neck that tend to enlarge, not normally anything sinister, but thats where it started and they can see it if it returns or even if they have a slight cold! But mine was in a different place, the groin. The glands were removed, so everything else was inside my abdomen. I won't see any change. Im gonna be paranoid, like all the other HL sufferers.
What I'm trying to say is, if you or a loved one ever find yourself needing treatment, it is manageable. I know were all different, and we all react differently, and all chemos are different, but try to be positive, cos i think thats helped me a great deal. And its so nice getting all the comments on Facebook. They usually make me cry at day 7, but they really build me up and make me feel like i can do this. So thanks to all the people who have helped me. You know who you are!!!
Well I've rambled on here, i hope its not all too repetitive. It was more to put it all on one blog for clarity for me.
Hope you enjoy your Easter time, I'm gonna do my best to enjoy mine.
Ive been laying here deliberating.
How did i get here? The cancer thing.
When i was younger i decided many things were bad for me.
I never used aerosols. I changed to using the crystal deodorant, i lectured my sons about roll ons etc, if i used air freshener i would take a deep breath, spray and close the door quickly.
I used toiletries with the least nasty chemicals, hair dyes from the health shop with less nasty stuff.
I don't smoke, i drink very little. I do however have a good appetite, too good hence the constant 'cutting down'.
Is that what caused me to get cancer?
My birth mother (i was adopted) had a breast lump removed pre menopause and i believe she's been cancer free ever since. I don't have contact with her but I'm sure my cousin would tell me if it came back.
Is it my laptop that sits on my lap regularly, thats the area where it started?
The mind boggles. Maybe theres no reason.
My lovely mum had bowel cancer and liver cancer, not sure which was the primary, i would think bowel. But she had a healthy diet, and she never drank alcohol or smoked.
What is it thats causing all this cancer?
I read some research that said it was our lifestyles but the main reason is age.
My birth mother had it at 48 ish and i have it at 53.
I will never know the answer.
Im just glad its gone and hope it stays gone.
The chemo. Its a strange one. Its not sposed to be nice, and its not. But at times it surprises me how its not too bad. Other times not so good. But you seem to get in a bit of a routine.
The worst bit for me is having it. Not cos it makes me feel ill there and then. Its a psychological thing with me.
Going to the hospital itself makes me feel nauseous, very mildly, but nauseous all the same.
The moment i get there, i am desperate to leave, and yet me and Linda make the best of it. We take a picnic. We make plans together of things we'll do during chemo and after. We order things on line. We laugh and joke.
The next negative is the cannula. You do get used to them, and i never had a real problem with needles. I don't like them but it has to be done. As soon as its in i feel like a prisoner. I can't move my arm. I just sit there with a horrid feeling - Get it out!!!
Then the drugs. The anti emetic to stop me feeling sick. I have to have it, it works for me. But as it goes in i hate it. I have to wait for an hour for that and the oral anti emetic that i have at the same time to work. So i sit with saline (salt water) dripping in to me. Then hydrocortisone, again, yuk, but its better than the IV dexamethasone (this in tablet form is what keeps me feeling good for 5 days after. My life savers!). Then the 4 nasty drugs.
Doxorubicin
Bleomycin
Vincristine
Dacarbazine
Nasty strong poisons that all have different effects. But they've saved my life!!!!
Dr Jack told me if i didn't have the chemo, id be dead in 2 years! He's such a sweet talker.
Having the first 3 of these is fairly quick, which suits me, but the fourth one takes a couple of hours.
Ive started to wake early on chemo day specially so i can doze through this last one to make the time go faster. Its worked a couple of times. And usually, bless her heart, Linda rubs my feet.
I really can't tell you the worth of that girl. I couldn't have done it with out her, I CANT do it without her. Not just cos she rubs my feet. She's gone over and above anything i would ever expect any friend to do, and i will be forever in her debt. Her husband Ian, and Kerrie and Luke also need mentioning here, cos she's put me first so many times. And they have to put up with the effect all my worries must have had on her.
So when the last lot of crap has gone into me, i have a quick bit of saline again to flush everything through.
Then the cannulas removed. I feel like singing when this happens. Its such an amazing feeling. I don't even care how 'roughly' its removed. Not that they remove it roughly, but pulling at the tape that sticks it to me. I would even just pull it out, thats how desperate i feel to get the bugger out.
I have an injection of pegfilgastrim which gets my white cells topped up, and then i can escape.
I hate the journey home, again psychological, cos i don't know if I'm gonna be laughing and joking, or deadly silent, feeling rough.
As soon as I'm home, i hardly speak to Linda or my Sam who's waiting at home, having hoovered and tidied, bless him.
I go to my room and get in bed and wait to see what happens.
This last one has been quite good compared to about 4 others.
I so hope it stays like this till the end. It would make life a lot easier to cope with.
There are many little symptoms which are really irritating and not nice, but i can cope with them. Ive mentioned them before, but a quick list, just so they're all on this blog.
Nausea - fairly mild most of the time.
Headache, dizziness, 'spaced out'.
Constipation and wind!!!
Indigestion.
Mucositis where the digestive tract is irritated and inflamed. Really horrid this one. Sore tongue, sore throat and tummy. Gaviscon helps a bit.
Memory loss and stupidity!!! This one is frustrating, but a bit of fun at times. I have the mickey taken regularly!
Hair loss!! Also fun. Ive quite enjoyed the transformation, but I'm looking forward to not wearing silly hats.
Emotions. I believe it to be the steroids. I can cry for no reason. Usually its on the monday, day 7. Ive usually finished the steroids by sunday morning, so monday i let rip! I don't feel sad. Chris and Sam usually take the mickey out of me, which actually helps and makes me laugh at the same time.
Im sure there are other symptoms, but i can't remember!!
By day 8 I have the switch flick moment when about 10 in the morning i just feel wonderful. Its weird. Then i tend to overdo things until the next chemo!
And I'm halfway there. Only 6 more doses and its done, and hopefully done for good. I have to have regular check ups, and my worry is, i won't know if its coming back. Everyone else has nodes in the neck that tend to enlarge, not normally anything sinister, but thats where it started and they can see it if it returns or even if they have a slight cold! But mine was in a different place, the groin. The glands were removed, so everything else was inside my abdomen. I won't see any change. Im gonna be paranoid, like all the other HL sufferers.
What I'm trying to say is, if you or a loved one ever find yourself needing treatment, it is manageable. I know were all different, and we all react differently, and all chemos are different, but try to be positive, cos i think thats helped me a great deal. And its so nice getting all the comments on Facebook. They usually make me cry at day 7, but they really build me up and make me feel like i can do this. So thanks to all the people who have helped me. You know who you are!!!
Well I've rambled on here, i hope its not all too repetitive. It was more to put it all on one blog for clarity for me.
Hope you enjoy your Easter time, I'm gonna do my best to enjoy mine.
18.4.14
Happy Good Friday.
Im amazed. Im cutting down with the steroids, and I'm feeling good. Every so often i get a symptom, a nasty reminder of the chemo on tuesday. But all in all, I'm doing quite well this time.
Ive done a bit of gardening, I've pottered about. Ive played games on my laptop, and I've watched TV.
Ive gently moved round my spare room ready for a new cupboard that I'm collecting tomorrow. It now looks an awful mess!
But tomorrow, it will be sorted.
Ive emptied the cancer box! A box in the kitchen where i keep all my treatment paperwork, my medicines, anti sickness digestive biscuits, anti bacterial gel, and all sorts of interesting stuff. It seemed a bit pointless as i don't have cancer anymore! Ive put things in cupboards where they belong. Its made the kitchen look a bit nicer too.
Ive eaten for England.
I have a Creme Egg Easter Egg ready for the weekend, for if i get hungry! For if i ever have any space!
So id say it was a pretty good Good Friday.
Happy Good Friday.
Im amazed. Im cutting down with the steroids, and I'm feeling good. Every so often i get a symptom, a nasty reminder of the chemo on tuesday. But all in all, I'm doing quite well this time.
Ive done a bit of gardening, I've pottered about. Ive played games on my laptop, and I've watched TV.
Ive gently moved round my spare room ready for a new cupboard that I'm collecting tomorrow. It now looks an awful mess!
But tomorrow, it will be sorted.
Ive emptied the cancer box! A box in the kitchen where i keep all my treatment paperwork, my medicines, anti sickness digestive biscuits, anti bacterial gel, and all sorts of interesting stuff. It seemed a bit pointless as i don't have cancer anymore! Ive put things in cupboards where they belong. Its made the kitchen look a bit nicer too.
Ive eaten for England.
I have a Creme Egg Easter Egg ready for the weekend, for if i get hungry! For if i ever have any space!
So id say it was a pretty good Good Friday.
Thursday 17 April 2014
17.4.14
What an exciting day!
My life has become a social whirlwind.
I had breakfast.
I got up and bathed.
I walked the dogs.
I came home again, and i ate.
I watched TV and i ate again.
Then bed!
I think somewhere in there, i fell asleep too.
Im hoping tomorrow will bring lots of fun and happiness, after all, it is Good Friday.
I shall not hold my breath! That would be silly. Id pass out!
Regardless of not much substance in my week 1, I'm happy.
Im happy in the hope the Easter Bunny will call on me.
Good night.
What an exciting day!
My life has become a social whirlwind.
I had breakfast.
I got up and bathed.
I walked the dogs.
I came home again, and i ate.
I watched TV and i ate again.
Then bed!
I think somewhere in there, i fell asleep too.
Im hoping tomorrow will bring lots of fun and happiness, after all, it is Good Friday.
I shall not hold my breath! That would be silly. Id pass out!
Regardless of not much substance in my week 1, I'm happy.
Im happy in the hope the Easter Bunny will call on me.
Good night.
Wednesday 16 April 2014
16.4.14
Ha ha ha, he he he, I'm the laughing gnome and you can't catch me.
Thats what i was singing earlier. I was so high. Day 1 and I'm feeling good. Thank god for steroids.
However, I'm starting to get the symptoms.
The indigestion and therefore the gaviscon. Yuk, but it helps.
The throat tightening because of the mucositis. The whole of my digestive tract swells and feels very uncomfortable. Through the day and night i feel like my oesophagus is sticking together. A mouthful of water helps for about 5 minutes and then back to stickiness.
The bloating, due to the mucositis. I feel like I've eaten a 3 course meal, so stuffed, whether I've eaten or not.
Hot flushes, thank god for my little fan!
I think thats all for now.
Im awaiting the 'drain pipe' down the throat feeling, that'll be tomorrow, and i think these symptoms have all started a few days earlier than usual.
But it could be worse. A few more days and ill be on the way back up again.
And i had a good day.
Lyn walked the doggies for me.
Saw Linda. It was her birthday. Would have liked to go out for lunch or something, but we did go out on monday. And she had a lovely cream tea with her lovely Kerrie.
Jenni came round and did some chores for me. She entertained me for a few hours, bless her.
Then time to chill.
And then a quick blog before bedtime. Ive tried to keep awake until bedtime, but its not really happened. Ive dozed off about 4 times this evening. Hope i don't wake at 4.30, but you never know.
So its time for a bit of proper shuteye.
Be kind to me thursday, please.
Ha ha ha, he he he, I'm the laughing gnome and you can't catch me.
Thats what i was singing earlier. I was so high. Day 1 and I'm feeling good. Thank god for steroids.
However, I'm starting to get the symptoms.
The indigestion and therefore the gaviscon. Yuk, but it helps.
The throat tightening because of the mucositis. The whole of my digestive tract swells and feels very uncomfortable. Through the day and night i feel like my oesophagus is sticking together. A mouthful of water helps for about 5 minutes and then back to stickiness.
The bloating, due to the mucositis. I feel like I've eaten a 3 course meal, so stuffed, whether I've eaten or not.
Hot flushes, thank god for my little fan!
I think thats all for now.
Im awaiting the 'drain pipe' down the throat feeling, that'll be tomorrow, and i think these symptoms have all started a few days earlier than usual.
But it could be worse. A few more days and ill be on the way back up again.
And i had a good day.
Lyn walked the doggies for me.
Saw Linda. It was her birthday. Would have liked to go out for lunch or something, but we did go out on monday. And she had a lovely cream tea with her lovely Kerrie.
Jenni came round and did some chores for me. She entertained me for a few hours, bless her.
Then time to chill.
And then a quick blog before bedtime. Ive tried to keep awake until bedtime, but its not really happened. Ive dozed off about 4 times this evening. Hope i don't wake at 4.30, but you never know.
So its time for a bit of proper shuteye.
Be kind to me thursday, please.
Tuesday 15 April 2014
15.4.14
Chemo Number 6
Went uneventfully apart from Linda massaging my feet which put me to sleep so i missed an hour or so of the chemo. I think thats the way to go. Sleep through it. I will attempt it during number 7.
The highlight of the day, apart from the foot massage, is its HALFWAY.
I have to get over the nasty symptoms and then i class it as proper halfway. So next wednesday should be the day. 23rd April.
Got home about 2.30. Straight to bed to try and sleep it off. You never know how you're gonna feel.
Mild nausea and headache. Hot flushes. Seems to be ok at the mo.
Ive had a tin of spagetti bolognaise. Its carb, its quick, it seems to hit the spot.
And I've had my anti sickness staple, digestives.
Im feeling relatively good at the mo, hope it stays that way.
I may be awake in the middle of the night due to my best friends the steroids. If so, i'll stop by and say hi. But I'm sure nothing exciting will happen between now and then. I won't win the lottery, and i certainly won't do a bungey jump!
A' demain!
Chemo Number 6
Went uneventfully apart from Linda massaging my feet which put me to sleep so i missed an hour or so of the chemo. I think thats the way to go. Sleep through it. I will attempt it during number 7.
The highlight of the day, apart from the foot massage, is its HALFWAY.
I have to get over the nasty symptoms and then i class it as proper halfway. So next wednesday should be the day. 23rd April.
Got home about 2.30. Straight to bed to try and sleep it off. You never know how you're gonna feel.
Mild nausea and headache. Hot flushes. Seems to be ok at the mo.
Ive had a tin of spagetti bolognaise. Its carb, its quick, it seems to hit the spot.
And I've had my anti sickness staple, digestives.
Im feeling relatively good at the mo, hope it stays that way.
I may be awake in the middle of the night due to my best friends the steroids. If so, i'll stop by and say hi. But I'm sure nothing exciting will happen between now and then. I won't win the lottery, and i certainly won't do a bungey jump!
A' demain!
Monday 14 April 2014
14.4.14
Look at that date, its pretty. 14.4.14.
Today was nice.
Went for my fortnightly blood tests. It wasn't my usual nurse, i had a doctor who was good at taking blood, but was a bit more serious than nursey.
That was followed by a drive round Sandbanks on a beautiful blue sky day.
Urban Reef for lunch, but not overly impressed with the food today. Don't know if it was my taste buds (which I've decided to call my cotton buds as food tastes like cotton!), or the chef!
A little walk on the sand which always looks so inviting, but after you've done it, you regret it cos of the sand chafing the skin! And finding its way into places it really shouldn't.
Back to Lindas for a bit of lounging time in her summer house. And she took this snap of me. I apologise for my steroidy face - you should see the steroidy body!
Look at that date, its pretty. 14.4.14.
Today was nice.
Went for my fortnightly blood tests. It wasn't my usual nurse, i had a doctor who was good at taking blood, but was a bit more serious than nursey.
That was followed by a drive round Sandbanks on a beautiful blue sky day.
Urban Reef for lunch, but not overly impressed with the food today. Don't know if it was my taste buds (which I've decided to call my cotton buds as food tastes like cotton!), or the chef!
A little walk on the sand which always looks so inviting, but after you've done it, you regret it cos of the sand chafing the skin! And finding its way into places it really shouldn't.
Back to Lindas for a bit of lounging time in her summer house. And she took this snap of me. I apologise for my steroidy face - you should see the steroidy body!
I feel the need to make my bald head normal! I don't want to wear a wig, or a hat, or a scarf. There are times when i should, but i want to be the one who decides when that time is. Ive gone for so long with scrappy hair, and a baldy head doesn't look that much worse, not to me anyway.
Why should women wear a wig, almost out of shame, or embarrassment? Its our own problem/issue, but id like it not to be. So, although i don't look like Sinead O'Connor, i also don't look like Harry Hill.
Im me, with no hair cos of chemo. So I'm hoping i don't rush to cover up when someones at the door, or if i have to go out.
Saying that, my head gets flipping cold. I put my hat on, and 10 minutes later I'm having a hot flush.
Anyway, an evening spent with the lovely Jenni and her craziness.
And now a bit of peace in bed before bed byes.
So number 6 tomorrow. Filled with trepidation but also determination. Its gotta be done, so i better get on and do it.
I may or may not be blogging tomorrow. So i'll see you when i see you.
Sunday 13 April 2014
13.4.14
Another sun shiny day.
I woke early, as usual and watched my porthole sun shadow move round the room.
I even managed to walk the doggies today which was nice as its Dotties 2nd birthday today.
We met Karen and Archie round the park, and Tilly the Old English Sheepdog.
Dottie managed to get cross with two dogs who decided to sniff her bum whilst Ruby ran to fetch the ball, again and again and again....
Home again and expecting to relax with a cuppa in the sunny garden, but no.....
Straight away i start gardening. I finished off a patch of weeding, planted a rhododendron, cut the grass, and strimmed as well, moved some pots and stuff about, and lots of other stuff.
At one stage, i rested on a garden chair and enjoyed the warmth from the sun. From the area i was weeding and planting, up popped two small children from next door. Dom and Ollie. They made themselves comfy on a garden bin and told me about their new bike, and they were going to the park in a minute.
Then i realised with horror - i was bald. They'd never seen me bald before. Had i frightened them? They're probably used to characters like Dobby and Gollum. They did look quite curious and were very keen to stay chatting with me, and when i went to the other end of the garden, so did they. Ollie in particular. I had a lucky escape when they went to the park - or did they have a lucky escape from sci-fi road!
I felt my back aching a little so thought id better stop at 1pm! I did stop for a tea break a couple of times. Much to Ollies displeasure. Bless his cotton socks. They're dear little souls.
Another sun shiny day.
I woke early, as usual and watched my porthole sun shadow move round the room.
I even managed to walk the doggies today which was nice as its Dotties 2nd birthday today.
We met Karen and Archie round the park, and Tilly the Old English Sheepdog.
Dottie managed to get cross with two dogs who decided to sniff her bum whilst Ruby ran to fetch the ball, again and again and again....
Home again and expecting to relax with a cuppa in the sunny garden, but no.....
Straight away i start gardening. I finished off a patch of weeding, planted a rhododendron, cut the grass, and strimmed as well, moved some pots and stuff about, and lots of other stuff.
At one stage, i rested on a garden chair and enjoyed the warmth from the sun. From the area i was weeding and planting, up popped two small children from next door. Dom and Ollie. They made themselves comfy on a garden bin and told me about their new bike, and they were going to the park in a minute.
Then i realised with horror - i was bald. They'd never seen me bald before. Had i frightened them? They're probably used to characters like Dobby and Gollum. They did look quite curious and were very keen to stay chatting with me, and when i went to the other end of the garden, so did they. Ollie in particular. I had a lucky escape when they went to the park - or did they have a lucky escape from sci-fi road!
I felt my back aching a little so thought id better stop at 1pm! I did stop for a tea break a couple of times. Much to Ollies displeasure. Bless his cotton socks. They're dear little souls.
What a corker!
That little bit's taken me weeks, although i have been ill.
So, tomorrow!
Bloods day has come round far too quickly. Bloods day always is a day when Linda and i go to a nice restaurant (usually, but the last one was a let down) and have something nice for lunch. Tomorrow it is Urban Reef, one of my favourites, as it's Linda's birthday on wednesday. I will not be in a suitably good mood to wine and dine her then, so tomorrow it is. Blood day also though is a day of forthcoming doom. The next day is number 6. I shall try to look at it with a positivity cos at least i can strike another one off my list. I will be half way, but i tend to feel half way is about a week after chemo. So i shall leave that landmark till 23rd or 24th.
So really, i did quite well to hang on to my hair for so long, and i use the words 'hang on' loosely.
So heres a photo of me with my wig on! I wonder if Ollie would find the wigged me, worse than the bald me?
I am leading up to putting a baldy shot on here!
Anyway, thats my lot for today. So i shall leave you to enjoy your sunday evening.
Goodnight one and all.
Saturday 12 April 2014
12.4.14
Its weird sleeping with no hair! My heads a little bristly, i need a wet shave. But its so nice to the touch.
And so nice waking up and not looking like a scarecrow.
I wore my wig today. I was worried it wouldn't feel secure, but it did. I don't feel a gust of wind would have me running down the road in hot pursuit of it.
But when it comes off, its like sticking your head in a freezer. Or that feeling when you come out of the sea and your costume is wet. Cold and uncomfortable.
I have various hats and scarves dotted round the house in case the need arises. I have a hat by the front door in case someone knocks.
However!
Ive had a very wicked thought!
Remember a few blogs back when a nice lady from Deaf Childrens Charity rang my door bell?
Mwahahaha.
Im gonna answer in bald mode.
I may even say, 'Hello' in a very pathetic 'I'm so ill' style.
Do you think some people would feel very uncomfortable?
I can see I'm gonna have some fun here.
Its weird sleeping with no hair! My heads a little bristly, i need a wet shave. But its so nice to the touch.
And so nice waking up and not looking like a scarecrow.
I wore my wig today. I was worried it wouldn't feel secure, but it did. I don't feel a gust of wind would have me running down the road in hot pursuit of it.
But when it comes off, its like sticking your head in a freezer. Or that feeling when you come out of the sea and your costume is wet. Cold and uncomfortable.
I have various hats and scarves dotted round the house in case the need arises. I have a hat by the front door in case someone knocks.
However!
Ive had a very wicked thought!
Remember a few blogs back when a nice lady from Deaf Childrens Charity rang my door bell?
Mwahahaha.
Im gonna answer in bald mode.
I may even say, 'Hello' in a very pathetic 'I'm so ill' style.
Do you think some people would feel very uncomfortable?
I can see I'm gonna have some fun here.
Heres a photo of me, follically challenged, but as you can see, i have feathered! I blame it on the muesli - too many seeds.
When i take some photos of me in my wig and other scarves, looking ok enough to not cause anyone to need a whiff of smelling salts, i shall put them on here.
Anyway, its time to put my bristly head on my pillow.
Thought of the day. If i had a water bed, i wonder if my bristles would puncture it?
Friday 11 April 2014
11.4.14
A proper switch flick day today.
Feel a lot better. Still wheezy and coughing, but feel happier.
I did a little gardening, just put some plants in. It looks lovely. Hoping to do a little more on sunday, but must remember not to overdo it!!!
I sat on the decking in the sun and had a cup of coffee, which is strange cos I've gone off coffee since chemo. And i had a hot crossed bun. It was lovely to sit in the sun. Lets hope it lasts.
Linda came round at 2 to take me out for lunch. We had a wonderful sandwich at Haskins and bought a few more plants. I found a lovely camellia with flowers that looked like raspberry ripple ice cream. Chris calls himself a raspberry ripple/cripple, and as I'm going to visit him tomorrow and view his possible new property, I've got it for him for a house warming pressy! Im sure he'll appreciate it.
Then home for a sit in the summer house with a cuppa and a giggle.
The subject turned to my hair, or lack of it.
Having tried my wig yesterday, i feel i look nicer in the wig rather than the pathetic covering that i call hair. It seems a lifetime ago that i had strong thick shiny hair.
Almost on the spur of the moment, we shaved it off!
When i say spur of the moment, its something thats been nibbling at my grey matter for weeks.
Its gonna happen sometime.
I wouldn't have to be covered in stray hairs everyday.
I wouldn't find my hair everywhere i go, in the bed, on the carpet, on my clothes, in my food, in the car, on Linda!
It wouldn't block the plughole.
More importantly, it wouldn't be going round and round my head. Shall i do it? Shall i not do it? With the worry of making the wrong decision.
So, the deed is done. And i didn't expect to look like Sinead O'Connor, but it doesn't look too bad. It looks a darn sight better than my scrappy bit of hair. It was starting to look like last years birds nest!
Hats have been modelled this afternoon. Scarves, feather boas, and of course the wig. I will put some photos on over the weekend of me in various poses with various props! You lucky lucky things!
Well all this bald headedness has made me very tired, so off to bedfordshire for me. At least i dont have to worry about my hair falling out in bed tonight.
A proper switch flick day today.
Feel a lot better. Still wheezy and coughing, but feel happier.
I did a little gardening, just put some plants in. It looks lovely. Hoping to do a little more on sunday, but must remember not to overdo it!!!
I sat on the decking in the sun and had a cup of coffee, which is strange cos I've gone off coffee since chemo. And i had a hot crossed bun. It was lovely to sit in the sun. Lets hope it lasts.
Linda came round at 2 to take me out for lunch. We had a wonderful sandwich at Haskins and bought a few more plants. I found a lovely camellia with flowers that looked like raspberry ripple ice cream. Chris calls himself a raspberry ripple/cripple, and as I'm going to visit him tomorrow and view his possible new property, I've got it for him for a house warming pressy! Im sure he'll appreciate it.
Then home for a sit in the summer house with a cuppa and a giggle.
The subject turned to my hair, or lack of it.
Having tried my wig yesterday, i feel i look nicer in the wig rather than the pathetic covering that i call hair. It seems a lifetime ago that i had strong thick shiny hair.
Almost on the spur of the moment, we shaved it off!
When i say spur of the moment, its something thats been nibbling at my grey matter for weeks.
Its gonna happen sometime.
I wouldn't have to be covered in stray hairs everyday.
I wouldn't find my hair everywhere i go, in the bed, on the carpet, on my clothes, in my food, in the car, on Linda!
It wouldn't block the plughole.
More importantly, it wouldn't be going round and round my head. Shall i do it? Shall i not do it? With the worry of making the wrong decision.
So, the deed is done. And i didn't expect to look like Sinead O'Connor, but it doesn't look too bad. It looks a darn sight better than my scrappy bit of hair. It was starting to look like last years birds nest!
Hats have been modelled this afternoon. Scarves, feather boas, and of course the wig. I will put some photos on over the weekend of me in various poses with various props! You lucky lucky things!
Well all this bald headedness has made me very tired, so off to bedfordshire for me. At least i dont have to worry about my hair falling out in bed tonight.
Thursday 10 April 2014
10.4.14
What a lovely day. Jenni came round prior to her charity hair cut and we set off to Nandos for lunch. If you're gonna fund raise, you have to do it on a full stomach!
What a lovely day. Jenni came round prior to her charity hair cut and we set off to Nandos for lunch. If you're gonna fund raise, you have to do it on a full stomach!
Lunch was amazing. Haven't been to Nandos for ages, and the tastes were soooo tangy, it hit the spot. Felt so stuffed after butterfly chicken, corn on the cob, coleslaw and chips. Olives and the best orange juice.
They're not olives, they're mine!!
We then headed for the hairdressers for the fait accompli. The lovely Callum was the coiffure.
He put Jenni's hair into a bunch on one side and cut it off, so that the photographer/reporter from the Echo could take a photo of Jenni with one side short and one side long.
Then off with the other side and time to try and make something of the cropped top knob.
Heres the before and after. It looks amazing. I didn't know she could look so good!!!
So Callum did a good job!
We visited M&S and bought a few provisions for dinner and then home to relax before Jenni's mum arrived with the wine.
By about 8.30 the hunger that i thought would never return after lunch, actually returned. So we had cheesy nachos with tomato salsa, chorizo and guacamole. It was scrummy. I feel stuffed again!
Now she's gone home and taken with her a load of noise and a few funny photos of her pulling funny faces.
And relax.....
Wednesday 9 April 2014
10.4.14
Im doing this now cos i may have 2 blogs today.
Technically speaking this happened yesterday, but i was too busy rabbiting on about feeling the love!
Do you remember i was 'flashed' on my way to work after my first chemo?
Yesterday was my drivers awareness course.
Still feeling rough from my infection, i wasn't looking forward to sitting in a room with a bunch of strangers and being lectured about how naughty i have been!
Worried about the indigestion, i do tend to make weird noises at times, burp-like!
Worried about the cough, which is still quite productive and rattling.
I left in plenty of time, aware of the comment on the letter. 'If you're not there on time, you won't be allowed in!' Holy mother of Mary, its very strict!
I had been responsible, and the day before Linda and i had driven there to find out about parking. Theres plenty of space for cars on the forecourt, so thats good. Im not able to walk too far without huffing and puffing on a good day, but with my cough, its very difficult.
I get there, and some clown's put a sign up. 'Parking behind Streetwise!'
Im not gonna be able to do that so i parked on the road and go in, hoping to ask if its ok to park where i was for the course. But of course i walk in and theres no one there except the fast driving, phone answering, law breaking type of people, all looking annoyed, accepting, bored and none of them feeling friendly.
Eventually a nice lady, Margaret came out and said we could all give our names and show licenses etc. I rush to the front, wheezing, and after hearing my plea for parking, she allows me to park on the forecourt. She was lovely.
We all sat down, i was given special dispensation to go out of the room at any time if i had a coughing fit, cos on my entry to the building, the excessive activity of walking from the car to the building had brought on a coughing fit. Margaret and Brian, couldn't have been nicer or more helpful.
There was a wide range of people there. A lady from Zimbabwe - Tinya, an American lady, a South African - Vicky, an orthodox Jew - Moses, with his skull cap and curls. Mercedes drivers, Lexus drivers, Focus drivers. Mostly 'speeders', but a couple of 'mobile phone users', and one poor unfortunate older lady who had driven the wrong side of a bollard on a wet but sunny day. A police car was round the corner and 'nabbed' her! Thats the spirit. A genuine mistake deserves 3 points and £100 fine! That makes me angry. All the rest of us were aware of what we were doing! She wasn't.
Anyway. The course was informative, questioning, and i really enjoyed it. It certainly makes you think and see things in a different way. Theres no rush, you don't save much time if you pull out too quick, or if you try to stop someone overtaking you. Let them overtake if they're tailgating. It will waste one second of your time.
I vowed when leaving, i would be a better driver, more responsible, more aware of myself and others.
Got to the junction just near Streetwise, saw a car in the near distance, and i pulled out quickly so i could get home!!!!
How did that happen? I told myself off. Its a habit. Im gonna have to break it!
Theres no rush!
Anyway, ill be back later. Its Jenni's hair cutting off day! There will be photos!!!!!
Im doing this now cos i may have 2 blogs today.
Technically speaking this happened yesterday, but i was too busy rabbiting on about feeling the love!
Do you remember i was 'flashed' on my way to work after my first chemo?
Yesterday was my drivers awareness course.
Still feeling rough from my infection, i wasn't looking forward to sitting in a room with a bunch of strangers and being lectured about how naughty i have been!
Worried about the indigestion, i do tend to make weird noises at times, burp-like!
Worried about the cough, which is still quite productive and rattling.
I left in plenty of time, aware of the comment on the letter. 'If you're not there on time, you won't be allowed in!' Holy mother of Mary, its very strict!
I had been responsible, and the day before Linda and i had driven there to find out about parking. Theres plenty of space for cars on the forecourt, so thats good. Im not able to walk too far without huffing and puffing on a good day, but with my cough, its very difficult.
I get there, and some clown's put a sign up. 'Parking behind Streetwise!'
Im not gonna be able to do that so i parked on the road and go in, hoping to ask if its ok to park where i was for the course. But of course i walk in and theres no one there except the fast driving, phone answering, law breaking type of people, all looking annoyed, accepting, bored and none of them feeling friendly.
Eventually a nice lady, Margaret came out and said we could all give our names and show licenses etc. I rush to the front, wheezing, and after hearing my plea for parking, she allows me to park on the forecourt. She was lovely.
We all sat down, i was given special dispensation to go out of the room at any time if i had a coughing fit, cos on my entry to the building, the excessive activity of walking from the car to the building had brought on a coughing fit. Margaret and Brian, couldn't have been nicer or more helpful.
There was a wide range of people there. A lady from Zimbabwe - Tinya, an American lady, a South African - Vicky, an orthodox Jew - Moses, with his skull cap and curls. Mercedes drivers, Lexus drivers, Focus drivers. Mostly 'speeders', but a couple of 'mobile phone users', and one poor unfortunate older lady who had driven the wrong side of a bollard on a wet but sunny day. A police car was round the corner and 'nabbed' her! Thats the spirit. A genuine mistake deserves 3 points and £100 fine! That makes me angry. All the rest of us were aware of what we were doing! She wasn't.
Anyway. The course was informative, questioning, and i really enjoyed it. It certainly makes you think and see things in a different way. Theres no rush, you don't save much time if you pull out too quick, or if you try to stop someone overtaking you. Let them overtake if they're tailgating. It will waste one second of your time.
I vowed when leaving, i would be a better driver, more responsible, more aware of myself and others.
Got to the junction just near Streetwise, saw a car in the near distance, and i pulled out quickly so i could get home!!!!
How did that happen? I told myself off. Its a habit. Im gonna have to break it!
Theres no rush!
Anyway, ill be back later. Its Jenni's hair cutting off day! There will be photos!!!!!
9.4.14
Its amazing how my life has changed in the last 4 months.
I used to be a lady who lunched. Retail therapy. A member of a Rock Choir. And i enjoyed going to work, be it looking after my lady with a brain injury, or doing sugaring, massage, nails, etc.
I visited friends and i laughed and joked. I was cheeky and flirty.
Oh to go back to those times. Or better still to go forward to those times when I'm like that again.
I have become a person who uses words like cannula, pegfilgastrim, and neutropenia on a regular basis, with a full understanding of the words. Im almost medically trained with my new knowledge.
Im a woman who is caught up in herself and her health problems. I think about me now. Im not comfortable with that. Being a mum, you think of your offspring. Now my offspring think about me. Sam tells me off if i do something i shouldn't. He clucks over me. 'Don't do too much. Sit down and rest. What do you want to eat? Cup of tea?'
Bless him.
Chris and Joe show me their concern. They worry about me. Chris laughs at me when I'm emotional. It puts it in perspective, and makes me laugh.
Im obsessed with my symptoms, of aches and pains, indigestion, wind, constipation, nausea, mucositis, tummy ache. Poor me.
Hair loss, weight gain, emotional moments and sobbing for no reason. Crying over the tragedy of Peaches Geldofs death and then crying cos someones put a nice video on Facebook. Sometimes not knowing whether to laugh or cry so doing them both together.
I have become intolerant (even more than i was!!). Wanting to shock people who 'cross' me with, 'I have cancer and you've just got me out of bed to ask if I've heard of your charity!'
But i have amazed myself at what i am going through. Who'd have thought id be ok about having cannulas on a regular basis, that id say things like, 'I'm nauseous but i can cope with it!'
When you're in this place, you do cope. You don't have a choice. And I'm hoping at the end of it i will be a stronger person. Someone with a deep insight to another persons suffering. I had empathy before, but i feel it even deeper now.
At the moment tho, i will soak up the love.
Linda and my boys, Jenni, Linzi and Mary. Lyn walking the dogs when i don't have the energy. Mandys practical help. All my new lymphoma friends, Mike, Christine, Joan, Lizzie and Liz, Emma and Helen, to name just a few. They're all inspirational people who are going or have gone through something similar to me. My many friends on Facebook that leave me messages and comments, and the friends not on Facebook too. Far too many to mention.
The people who i don't know who have sent me gifts! Yes, people Ive never met have sent me gifts! How amazing is that?
Hope i haven't forgotten someone, or offended anyone! If i have, i will blame it on chemo brain! Im worrying now, in case i have forgotten someone!!!!
So many people have made lovely gestures.
Do you know, when I'm feeling low, when I'm sick or in pain, when i don't think i can do it anymore, its all this love that helps me through. The support, the encouragement. Its worth a million pounds.
I am rich.
Its amazing how my life has changed in the last 4 months.
I used to be a lady who lunched. Retail therapy. A member of a Rock Choir. And i enjoyed going to work, be it looking after my lady with a brain injury, or doing sugaring, massage, nails, etc.
I visited friends and i laughed and joked. I was cheeky and flirty.
Oh to go back to those times. Or better still to go forward to those times when I'm like that again.
I have become a person who uses words like cannula, pegfilgastrim, and neutropenia on a regular basis, with a full understanding of the words. Im almost medically trained with my new knowledge.
Im a woman who is caught up in herself and her health problems. I think about me now. Im not comfortable with that. Being a mum, you think of your offspring. Now my offspring think about me. Sam tells me off if i do something i shouldn't. He clucks over me. 'Don't do too much. Sit down and rest. What do you want to eat? Cup of tea?'
Bless him.
Chris and Joe show me their concern. They worry about me. Chris laughs at me when I'm emotional. It puts it in perspective, and makes me laugh.
Im obsessed with my symptoms, of aches and pains, indigestion, wind, constipation, nausea, mucositis, tummy ache. Poor me.
Hair loss, weight gain, emotional moments and sobbing for no reason. Crying over the tragedy of Peaches Geldofs death and then crying cos someones put a nice video on Facebook. Sometimes not knowing whether to laugh or cry so doing them both together.
I have become intolerant (even more than i was!!). Wanting to shock people who 'cross' me with, 'I have cancer and you've just got me out of bed to ask if I've heard of your charity!'
But i have amazed myself at what i am going through. Who'd have thought id be ok about having cannulas on a regular basis, that id say things like, 'I'm nauseous but i can cope with it!'
When you're in this place, you do cope. You don't have a choice. And I'm hoping at the end of it i will be a stronger person. Someone with a deep insight to another persons suffering. I had empathy before, but i feel it even deeper now.
At the moment tho, i will soak up the love.
Linda and my boys, Jenni, Linzi and Mary. Lyn walking the dogs when i don't have the energy. Mandys practical help. All my new lymphoma friends, Mike, Christine, Joan, Lizzie and Liz, Emma and Helen, to name just a few. They're all inspirational people who are going or have gone through something similar to me. My many friends on Facebook that leave me messages and comments, and the friends not on Facebook too. Far too many to mention.
The people who i don't know who have sent me gifts! Yes, people Ive never met have sent me gifts! How amazing is that?
Hope i haven't forgotten someone, or offended anyone! If i have, i will blame it on chemo brain! Im worrying now, in case i have forgotten someone!!!!
So many people have made lovely gestures.
Do you know, when I'm feeling low, when I'm sick or in pain, when i don't think i can do it anymore, its all this love that helps me through. The support, the encouragement. Its worth a million pounds.
I am rich.
Tuesday 8 April 2014
8.4.14
Guess who went to a rave today?
Sorry, i didn't mean rave, i meant MRI scan!
I was worried cos some people had told me it makes you nauseous, and i really didn't wanna feel nauseous, especially cos I've had a bad time in the last few days.
Well it didn't make me nauseous at all.
It didn't look that different to the CT and PET scanner.
I was placed on the scanner table and cos i was having my shoulder scanned, i had a 'casing' on my shoulder and other wedges placed to keep my arm in the right place and to stop it moving.
I had ear plugs, and earphones and was given an option of music. Radio 2, 3, 4, or 5!
I closed my eyes all the same as i went in. I didn't want to awaken any claustrophobic feelings. I had a button that i could press if i had any problems.
So, being that it was 2pm, the news came on. I lay there wondering if it had started or not. And then.....
Oh good lord. A rave started. No banging and crashing as id been warned. It was more of a techno music sound. Beep beep beep, burr, burr, burr, peep, peep, peep. And then back to beep again. I was so surprised. I couldn't hear the music whilst the rave was occurring, but i managed to make out REM - losing my religion, followed by Neun und neunzig luftballons.
It was nothing to worry about, but i did feel uncomfortable. It was more cos of my position, my aching stomach muscles from coughing so much, and my back was twingeing.
So i felt quite desperate that it came to a close. I was told it would take about 30 mins.
What i did was guesstimate! The news - about 5 mins, REM - about 3 mins, 99 luftballons - 3 mins. And then there were 2 other songs, so another 6 mins. In between Patrick Kielty (yes i chose radio 2!) talked for Ireland, so another 3 minutes, roughly. Then cos it made me feel better, i added 2 minutes cos i told myself the songs were more than likely more than 3 minutes long.
22 minutes. Cant be much longer now.
Whirring, beeping, pipping. All sorts of noises.
Occasionally the scanner staff asked if i were ok. 'Yes' i replied, 'how much longer?'
I was told 10 minutes, so i listened out for the next song - M People - Moving on up.
I counted the seconds for about 4 minutes and the staff asked again,
'Are you ok?
'Yes, how much longer?'
'About 10 mins!'
And still the scanner beeped and whirred, and everytime it started with the noise again, i jumped out of my skin!
Then it was over. The relief.
I was dragged back into sanity and was able to slowly sit up, remove my ear plugs etc and escape the clutches of the MRI scanner, which had only been opened a month before by Harry Redknapp. I liked that idea, cos i like Harry cos of the time my Chris was at Southampton Football ground to watch Michael Owen play and it was arranged he should meet Michael.
Chris was so nervous and excited that a migraine ensued and he missed the whole game whilst he threw up and then slept in the club bar.
Whilst he sat in his wheelchair, green and feeling awful, Jamie and Harry came into the lobby near the changing rooms. I didn't know who they were, but Chris's face lit up. The two of them, and Sandra, Harrys wife, chatted for ages with Chris. They were soooooooo nice to him. It made Chris's day. For that gesture alone, i like the Redknapps. Chris's migraine just melted away.
Michael had injured his leg in the game, and came out of the changing room for about 5 minutes and didn't really have anything to say. Pleasant, but not a Redknapp!
Of course, my Linda took me to the scan. As she always does.
Theres nothing nicer than coming out of a scan, or lung function tests, or even chemo, to have the lovely smiling face of my Linda.
We came home again and enjoyed a cuppa before the busy bee Linda buzzed off.
The evening spent chatting with Jenni and then id like to say i relaxed in front of the tv.
But its not that easy relaxing when you have tummy ache. Don't know why. It could be the antibiotics, it could be the achey muscles from coughing, or it could be the chemo. It could be all 3. I will never know. I just wish it would do one!
Maybe tomorrow!
The moral of the story however,
MRI SCANS ARE NOTHING TO WORRY ABOUT
Guess who went to a rave today?
Sorry, i didn't mean rave, i meant MRI scan!
I was worried cos some people had told me it makes you nauseous, and i really didn't wanna feel nauseous, especially cos I've had a bad time in the last few days.
Well it didn't make me nauseous at all.
It didn't look that different to the CT and PET scanner.
I was placed on the scanner table and cos i was having my shoulder scanned, i had a 'casing' on my shoulder and other wedges placed to keep my arm in the right place and to stop it moving.
I had ear plugs, and earphones and was given an option of music. Radio 2, 3, 4, or 5!
I closed my eyes all the same as i went in. I didn't want to awaken any claustrophobic feelings. I had a button that i could press if i had any problems.
So, being that it was 2pm, the news came on. I lay there wondering if it had started or not. And then.....
Oh good lord. A rave started. No banging and crashing as id been warned. It was more of a techno music sound. Beep beep beep, burr, burr, burr, peep, peep, peep. And then back to beep again. I was so surprised. I couldn't hear the music whilst the rave was occurring, but i managed to make out REM - losing my religion, followed by Neun und neunzig luftballons.
It was nothing to worry about, but i did feel uncomfortable. It was more cos of my position, my aching stomach muscles from coughing so much, and my back was twingeing.
So i felt quite desperate that it came to a close. I was told it would take about 30 mins.
What i did was guesstimate! The news - about 5 mins, REM - about 3 mins, 99 luftballons - 3 mins. And then there were 2 other songs, so another 6 mins. In between Patrick Kielty (yes i chose radio 2!) talked for Ireland, so another 3 minutes, roughly. Then cos it made me feel better, i added 2 minutes cos i told myself the songs were more than likely more than 3 minutes long.
22 minutes. Cant be much longer now.
Whirring, beeping, pipping. All sorts of noises.
Occasionally the scanner staff asked if i were ok. 'Yes' i replied, 'how much longer?'
I was told 10 minutes, so i listened out for the next song - M People - Moving on up.
I counted the seconds for about 4 minutes and the staff asked again,
'Are you ok?
'Yes, how much longer?'
'About 10 mins!'
And still the scanner beeped and whirred, and everytime it started with the noise again, i jumped out of my skin!
Then it was over. The relief.
I was dragged back into sanity and was able to slowly sit up, remove my ear plugs etc and escape the clutches of the MRI scanner, which had only been opened a month before by Harry Redknapp. I liked that idea, cos i like Harry cos of the time my Chris was at Southampton Football ground to watch Michael Owen play and it was arranged he should meet Michael.
Chris was so nervous and excited that a migraine ensued and he missed the whole game whilst he threw up and then slept in the club bar.
Whilst he sat in his wheelchair, green and feeling awful, Jamie and Harry came into the lobby near the changing rooms. I didn't know who they were, but Chris's face lit up. The two of them, and Sandra, Harrys wife, chatted for ages with Chris. They were soooooooo nice to him. It made Chris's day. For that gesture alone, i like the Redknapps. Chris's migraine just melted away.
Michael had injured his leg in the game, and came out of the changing room for about 5 minutes and didn't really have anything to say. Pleasant, but not a Redknapp!
Of course, my Linda took me to the scan. As she always does.
Theres nothing nicer than coming out of a scan, or lung function tests, or even chemo, to have the lovely smiling face of my Linda.
We came home again and enjoyed a cuppa before the busy bee Linda buzzed off.
The evening spent chatting with Jenni and then id like to say i relaxed in front of the tv.
But its not that easy relaxing when you have tummy ache. Don't know why. It could be the antibiotics, it could be the achey muscles from coughing, or it could be the chemo. It could be all 3. I will never know. I just wish it would do one!
Maybe tomorrow!
The moral of the story however,
MRI SCANS ARE NOTHING TO WORRY ABOUT
Monday 7 April 2014
7.4.14
Well i rang the hotline. I was admitted, cannula, again, IV antibiotics, chest Xray, and all around 3 in the morning. I sat in a chair, feeling really grotty for hours. I just wanted to go to bed.
Eventually i was taken to the ward where i managed to catch the odd 5 minutes of sleep in between lots of noise of the ward, and an extractor fan in my room.
Dr Jack came to visit me. He makes me smile. He's always so happy. He has a lovely smile. He said id done the right thing and then said i could go home with some oral antibiotics. I told him he'd made my day and he likened me to Clint Eastwood!
So, after hours of waiting for my drugs, and i mean hours, I'm home. Still feeling grotty. My chest hurts, especially when i cough.
Sams been a star. He took me to the hospital at 3am and stayed with me till about 6 ish. Then he came back at 12 ish to take me home. And then back again to collect my drugs cos they weren't ready and i really couldn't wait to go home any longer.
And joy of joys, its steroid 'come down' day. The day when all the emotions in the world gang up on me and make me cry for absolutely no reason. So I'm sobbing and going all over the place.
Well I've pulled myself together now, so panic over.
Its time now to recover.
Well i rang the hotline. I was admitted, cannula, again, IV antibiotics, chest Xray, and all around 3 in the morning. I sat in a chair, feeling really grotty for hours. I just wanted to go to bed.
Eventually i was taken to the ward where i managed to catch the odd 5 minutes of sleep in between lots of noise of the ward, and an extractor fan in my room.
Dr Jack came to visit me. He makes me smile. He's always so happy. He has a lovely smile. He said id done the right thing and then said i could go home with some oral antibiotics. I told him he'd made my day and he likened me to Clint Eastwood!
So, after hours of waiting for my drugs, and i mean hours, I'm home. Still feeling grotty. My chest hurts, especially when i cough.
Sams been a star. He took me to the hospital at 3am and stayed with me till about 6 ish. Then he came back at 12 ish to take me home. And then back again to collect my drugs cos they weren't ready and i really couldn't wait to go home any longer.
And joy of joys, its steroid 'come down' day. The day when all the emotions in the world gang up on me and make me cry for absolutely no reason. So I'm sobbing and going all over the place.
Well I've pulled myself together now, so panic over.
Its time now to recover.
Sunday 6 April 2014
7.4.14
I didn't blog yesterday cos i had Jenni round and i was feeling ok. I can't keep opening a blog and just saying, 'I'm fine!' Or 'I don't feel well!' It gets a bit tedious.
Well listen up!!!
I feel so weird. Ive had a cough and cold since before chemo. About 10 days now. I haven't had a temp, and nothing looks infected, if you get me!!
But, maybe cos of the steroids that are immune suppressants, its not clearing up. So i went to bed last night at 11 ish, and I've only slept for about an hour because of the racket I'm making.
You know those cute teddy bears that you tip and they make a growling sound? Thats me! Im wheezy and my chest feels so tight.
Ive tried sleeping in the upright position, hence the hours sleep. But its really uncomfortable.
I don't know what to do.
Do i ring the hotline? What can they do? I could be admitted, maybe antibiotics. Or they could say, 'you're fine, go to sleep!'
I could ring the GP out of hours number. They could listen to my chest, but they probably won't give me anything cos they don't like to step on the toes of the 'cancer team'.
I just wish i could fall asleep and wake up feeling better.
Ill give it one more try and if i can't i may ring the hotline. This is the dilemma that we face. Don't know what to do!!!
I didn't blog yesterday cos i had Jenni round and i was feeling ok. I can't keep opening a blog and just saying, 'I'm fine!' Or 'I don't feel well!' It gets a bit tedious.
Well listen up!!!
I feel so weird. Ive had a cough and cold since before chemo. About 10 days now. I haven't had a temp, and nothing looks infected, if you get me!!
But, maybe cos of the steroids that are immune suppressants, its not clearing up. So i went to bed last night at 11 ish, and I've only slept for about an hour because of the racket I'm making.
You know those cute teddy bears that you tip and they make a growling sound? Thats me! Im wheezy and my chest feels so tight.
Ive tried sleeping in the upright position, hence the hours sleep. But its really uncomfortable.
I don't know what to do.
Do i ring the hotline? What can they do? I could be admitted, maybe antibiotics. Or they could say, 'you're fine, go to sleep!'
I could ring the GP out of hours number. They could listen to my chest, but they probably won't give me anything cos they don't like to step on the toes of the 'cancer team'.
I just wish i could fall asleep and wake up feeling better.
Ill give it one more try and if i can't i may ring the hotline. This is the dilemma that we face. Don't know what to do!!!
Saturday 5 April 2014
5.4.14
Part 2
Turned out quite good in the end!
Not felt too bad. Still have the remnants of a cough and cold, but the normal, or previous chemo symptoms haven't really arrived with gusto! Im a lucky girl. Hope tomorrow it doesn't show its ugly head.
Be aware, when i say I'm not feeling too bad, that doesn't mean I'm feeling good. It just means I'm not grizzling and complaining as much as when I'm feeling dreadful.
To be fair, i don't think id notice any symptoms with all the food I've eaten today! I really wish i could stop. The steroids stop tomorrow so maybe next week ill be able to control my urges! Lets hope so otherwise I'm gonna have to buy a new, larger vehicle, and get some french doors fitted round the house.
Now, if the rain could just stop for tomorrow, i may be able to walk round the garden and maybe put a few plants in the ground.
Either way, I'm feeling a little positive. Hope I'm not being too previous!
Ill tell you the answer to that tomorrow morning.
Tatty bye.
Part 2
Turned out quite good in the end!
Not felt too bad. Still have the remnants of a cough and cold, but the normal, or previous chemo symptoms haven't really arrived with gusto! Im a lucky girl. Hope tomorrow it doesn't show its ugly head.
Be aware, when i say I'm not feeling too bad, that doesn't mean I'm feeling good. It just means I'm not grizzling and complaining as much as when I'm feeling dreadful.
To be fair, i don't think id notice any symptoms with all the food I've eaten today! I really wish i could stop. The steroids stop tomorrow so maybe next week ill be able to control my urges! Lets hope so otherwise I'm gonna have to buy a new, larger vehicle, and get some french doors fitted round the house.
Now, if the rain could just stop for tomorrow, i may be able to walk round the garden and maybe put a few plants in the ground.
Either way, I'm feeling a little positive. Hope I'm not being too previous!
Ill tell you the answer to that tomorrow morning.
Tatty bye.
5.4.14
Part 1
Chemo 1 - Jill 0
Here it is! I hoped i could hold back the symptoms this time with my creative use of steroids. But i was wrong!
Its not hideous at the mo, so don't feel the need to send some dishy paramedics round, and I'm hoping it doesn't get too bad. It was manageable last time with the following emotional day which I'm thinking will be monday. So no sympathy on monday please!
The mouth is throbbing, i had little sleep last night, so tired, and feeling very spaced out.
I shall continue with my day of TV, eating and rest and i will check in later with an update. Hopefully a not too bad update.
The rain doesn't help either!
Part 1
Chemo 1 - Jill 0
Here it is! I hoped i could hold back the symptoms this time with my creative use of steroids. But i was wrong!
Its not hideous at the mo, so don't feel the need to send some dishy paramedics round, and I'm hoping it doesn't get too bad. It was manageable last time with the following emotional day which I'm thinking will be monday. So no sympathy on monday please!
The mouth is throbbing, i had little sleep last night, so tired, and feeling very spaced out.
I shall continue with my day of TV, eating and rest and i will check in later with an update. Hopefully a not too bad update.
The rain doesn't help either!
Friday 4 April 2014
4.4.14
An uneventful day.
Not feeling too bad.
Hoping it stays that way!
Ive started to cut down the steroids so time will tell.
What am i saying, an uneventful day? Ive had a very tasty day but without the taste. What I'm saying is, the steroids have kicked in!
I made the most wonderful sandwich. Green salad leaves, feta cheese, red onion relish. Last time it was in muffins, this time its as a sandwich. Unfortunately, Ruby managed to nick the top bit of bread off of half of the sandwich while my back was turned! She didn't manage to eat it, but neither did i!
But the other 3/4 was wonderful. I could taste it, which is weird cos my taste buds seem to have vamoosed at the mo.
I won't bore you with the larder full of food I've also eaten. Im trying to forget that bit. It doesn't help when there's adverts on TV for pizza, and burgers and all food thats naughty. I never normally eat those things, so why now?
When this chemos over i have lots of dieting to do, really looking forward to that!
The sleeping's been ok this time. Ive woken early but if i stopped falling into unconsciousness during the day id probably sleep later in the mornings. What i have found that is a positive is, before chemo i used to worry about things i should have done but thought maybe i hadn't. I would, in a slightly waken stupor, get out of bed, put my dressing gown on, and wander round the house trying to correct my error. Which of course there wasn't. I would eventually wake properly and reprimand myself and send myself back to bed where i would lay for a while wondering why i was an idiot!
Well i seem to have stopped doing that.
The thing i do in its place is worry that I've taken the really dangerous drugs that are prescribed to me, and I've taken them twice, overdosed in fact. Strange cos the drugs i am prescribed are very minor and unimportant. The worst i could do would be to over antacid myself, or make myself even more hungry with steroids!
Some you win, some you lose!
An uneventful day.
Not feeling too bad.
Hoping it stays that way!
Ive started to cut down the steroids so time will tell.
What am i saying, an uneventful day? Ive had a very tasty day but without the taste. What I'm saying is, the steroids have kicked in!
I made the most wonderful sandwich. Green salad leaves, feta cheese, red onion relish. Last time it was in muffins, this time its as a sandwich. Unfortunately, Ruby managed to nick the top bit of bread off of half of the sandwich while my back was turned! She didn't manage to eat it, but neither did i!
But the other 3/4 was wonderful. I could taste it, which is weird cos my taste buds seem to have vamoosed at the mo.
I won't bore you with the larder full of food I've also eaten. Im trying to forget that bit. It doesn't help when there's adverts on TV for pizza, and burgers and all food thats naughty. I never normally eat those things, so why now?
When this chemos over i have lots of dieting to do, really looking forward to that!
The sleeping's been ok this time. Ive woken early but if i stopped falling into unconsciousness during the day id probably sleep later in the mornings. What i have found that is a positive is, before chemo i used to worry about things i should have done but thought maybe i hadn't. I would, in a slightly waken stupor, get out of bed, put my dressing gown on, and wander round the house trying to correct my error. Which of course there wasn't. I would eventually wake properly and reprimand myself and send myself back to bed where i would lay for a while wondering why i was an idiot!
Well i seem to have stopped doing that.
The thing i do in its place is worry that I've taken the really dangerous drugs that are prescribed to me, and I've taken them twice, overdosed in fact. Strange cos the drugs i am prescribed are very minor and unimportant. The worst i could do would be to over antacid myself, or make myself even more hungry with steroids!
Some you win, some you lose!
Thursday 3 April 2014
3.4.14
Grotty thursday.
Not feeling wonderful today. Not hideous, i can cope with it. However i feel its gonna get worse for a few days. But like I've said before, chemo never fails to amaze me. Just when i think i know whats gonna happen, it changes. So you never know i could have an amazing weekend. I can but hope. Either way, its gotta be done. Each day is nearer the end.
104 days till 16th july. Last chemo 8th july, all being well, and then a week to recover to a state where i can start to do things.
So what have i done today?
I woke at 5am.
Got up at 7 for a cup of hot water. Had a cuddle with the girls and then Lyn called round to take the darlings out for a walk. Lovely of her, cos I just don't have the energy at the mo. Hopefully by the weekend???
Then out of bed and sorted, and did a few very small chores.
Sam, my home slave, is incapacitated. He has a cough and cold, probably the one i started last friday and have the remnants of. So he's walking around the house like a member of the taliban - a cloth wrapped round his face to safeguard from the sand storms in afghanistan. Bless him, he's trying to not infect his mumma! Or re-infect.
A visit to the chemist for my prescription. I don't normally take any meds and suddenly i have heaps of different things for heaps of different symptoms. Luckily i get them free otherwise i would be bankrupt! £8.05 per item. Today alone would have been £24.15!
Then how sweet is this?
Grotty thursday.
Not feeling wonderful today. Not hideous, i can cope with it. However i feel its gonna get worse for a few days. But like I've said before, chemo never fails to amaze me. Just when i think i know whats gonna happen, it changes. So you never know i could have an amazing weekend. I can but hope. Either way, its gotta be done. Each day is nearer the end.
104 days till 16th july. Last chemo 8th july, all being well, and then a week to recover to a state where i can start to do things.
So what have i done today?
I woke at 5am.
Got up at 7 for a cup of hot water. Had a cuddle with the girls and then Lyn called round to take the darlings out for a walk. Lovely of her, cos I just don't have the energy at the mo. Hopefully by the weekend???
Then out of bed and sorted, and did a few very small chores.
Sam, my home slave, is incapacitated. He has a cough and cold, probably the one i started last friday and have the remnants of. So he's walking around the house like a member of the taliban - a cloth wrapped round his face to safeguard from the sand storms in afghanistan. Bless him, he's trying to not infect his mumma! Or re-infect.
A visit to the chemist for my prescription. I don't normally take any meds and suddenly i have heaps of different things for heaps of different symptoms. Luckily i get them free otherwise i would be bankrupt! £8.05 per item. Today alone would have been £24.15!
Then how sweet is this?
Dot and Ruby bought me a feel better gift. More beneficial than all the meds and only £1!!!
Now i am back on my bed hoping for a doze as i woke so early.
Why is it whenever i doze off, the phone rings or the door bell goes?
Fingers crossed!
Wednesday 2 April 2014
2.4.14
This is my second blog today following a strong urge to eat a muffin with cheese and relish. It wasn't as wonderful as last time. All i can think is the taste buds have 'gone' quicker and the tongue is sore quicker. Maybe it will all go quicker too????? Wishful thinking.
So. What have i done that is so exciting i need to tell my blog about?
Sweet FA!
I took more steroids at 3 which is always good cos i have to have them with food. So a little tiramisu aided my medication. It slips down easily and is soft and cold and moist - perfect for a tender mouth.
And a twister ice lolly was also taken as medication for said sore tongue, and only 45 calories. I'll be a size 10 soon without even trying!!!
One thing I've realised is that my life is on hold. I don't mean to wish my life away, but I'm unable to do so many things that i could do before without getting so short of breath, and i can only do anything on week 2. My joys in life during week 1, are my sons, Linda, my dogs, and they can be a bit irritating if I'm feeling rough, my laptop and food. Week 2 i can add seeing friends, shopping (for a short while), going for short walks, lunch out and my real love at the mo, gardening.
I forgot to say earlier when i talked about my chat with Dr Jack that i have to have an MRI Scan on my right shoulder. The PET scan showed i have a hotspot there and although they believe it to be nothing to do with HL they feel i should have a scan to make sure. I think i know whats caused it. Gardening. Ive been sawing down some ivy. I didn't think id done too much. My shoulder doesn't feel sore at all. But i will be more gentle next week when i start the excavating again!
Although i do have a full week booked in already.
I think its fairly safe to sign off now. I don't envisage anything exciting happening before tomorrow!
Sam has gone out for the evening, leaving me home alone. What mischief can i get up to?
Please send suggestions cos for the life of me, i can't think of anything!
This is my second blog today following a strong urge to eat a muffin with cheese and relish. It wasn't as wonderful as last time. All i can think is the taste buds have 'gone' quicker and the tongue is sore quicker. Maybe it will all go quicker too????? Wishful thinking.
So. What have i done that is so exciting i need to tell my blog about?
Sweet FA!
I took more steroids at 3 which is always good cos i have to have them with food. So a little tiramisu aided my medication. It slips down easily and is soft and cold and moist - perfect for a tender mouth.
And a twister ice lolly was also taken as medication for said sore tongue, and only 45 calories. I'll be a size 10 soon without even trying!!!
One thing I've realised is that my life is on hold. I don't mean to wish my life away, but I'm unable to do so many things that i could do before without getting so short of breath, and i can only do anything on week 2. My joys in life during week 1, are my sons, Linda, my dogs, and they can be a bit irritating if I'm feeling rough, my laptop and food. Week 2 i can add seeing friends, shopping (for a short while), going for short walks, lunch out and my real love at the mo, gardening.
I forgot to say earlier when i talked about my chat with Dr Jack that i have to have an MRI Scan on my right shoulder. The PET scan showed i have a hotspot there and although they believe it to be nothing to do with HL they feel i should have a scan to make sure. I think i know whats caused it. Gardening. Ive been sawing down some ivy. I didn't think id done too much. My shoulder doesn't feel sore at all. But i will be more gentle next week when i start the excavating again!
Although i do have a full week booked in already.
I think its fairly safe to sign off now. I don't envisage anything exciting happening before tomorrow!
Sam has gone out for the evening, leaving me home alone. What mischief can i get up to?
Please send suggestions cos for the life of me, i can't think of anything!
2.4.14
So i missed a day!!!
It was chemo day. It went well. Everything was there ready waiting for me, so no hanging around.
Jo, my nurse for the day was lovely, as they've all been. Ive never met a nicer bunch at the Dorset Cancer Centre.
Saw Dr Jack. He's very happy with me!! He was very pleased with my PET scan results. A very good response. He assures me i must carry on with all the chemo cos it will put me in a very favourable group. The group of people that have a very good prognosis. And he stressed again, a very favourable group, that can be cured forever! A very nice thought. Id hate to finish the chemo earlier and it come back a few months later.
So, number 5 is done. 7 more.
Got home and didn't feel wonderful so went to bed. The shakes started and i was quite shocked cos last time i had the steroids i was really good when i got home until i stopped them on the friday. The nausea followed the shakes, but luckily it was only for about 4 hours and it wasn't really bad hideous nausea. Had a few digestive bickies and hey presto, recovery began. Had some beans with cheese. Something quick and carbohydrate. Ate about half of it. Lets hope i stay feeling ok.
Had a restless night. Woke regularly needing water. I have, as I've said before, this irritation to my digestive tract, mucositis. Due to me being a sensitive soul! The chemo has decided thats what its gonna do to me to remind me I've had lymphoma, and notice i say 'I've had' lymphoma. So i wake up and feel like my throat has closed up and 'stuck' together. The water remedies this straight away. But of course it happens often through the night. But hey ho!
This morning, feeling tired and exhausted, but other than that not too bad. My best friends, the steroids, are working their magic. I am starting to feel hungry, hungry, hungry. If i think of food, like a muffin with goats cheese, red onion relish, salad leaves and balsamic vinegar, my mouth waters so much. I don't know what is holding me back from running downstairs and doing it! Although I've only had some bickies with my meds that need to be taken with food, so I'm sure i must be due some brekkie. So i may have to finish my blog now and continue with another one a bit later.
You have to get your priorities right in life. Am i right?
So i missed a day!!!
It was chemo day. It went well. Everything was there ready waiting for me, so no hanging around.
Jo, my nurse for the day was lovely, as they've all been. Ive never met a nicer bunch at the Dorset Cancer Centre.
Saw Dr Jack. He's very happy with me!! He was very pleased with my PET scan results. A very good response. He assures me i must carry on with all the chemo cos it will put me in a very favourable group. The group of people that have a very good prognosis. And he stressed again, a very favourable group, that can be cured forever! A very nice thought. Id hate to finish the chemo earlier and it come back a few months later.
So, number 5 is done. 7 more.
Got home and didn't feel wonderful so went to bed. The shakes started and i was quite shocked cos last time i had the steroids i was really good when i got home until i stopped them on the friday. The nausea followed the shakes, but luckily it was only for about 4 hours and it wasn't really bad hideous nausea. Had a few digestive bickies and hey presto, recovery began. Had some beans with cheese. Something quick and carbohydrate. Ate about half of it. Lets hope i stay feeling ok.
Had a restless night. Woke regularly needing water. I have, as I've said before, this irritation to my digestive tract, mucositis. Due to me being a sensitive soul! The chemo has decided thats what its gonna do to me to remind me I've had lymphoma, and notice i say 'I've had' lymphoma. So i wake up and feel like my throat has closed up and 'stuck' together. The water remedies this straight away. But of course it happens often through the night. But hey ho!
This morning, feeling tired and exhausted, but other than that not too bad. My best friends, the steroids, are working their magic. I am starting to feel hungry, hungry, hungry. If i think of food, like a muffin with goats cheese, red onion relish, salad leaves and balsamic vinegar, my mouth waters so much. I don't know what is holding me back from running downstairs and doing it! Although I've only had some bickies with my meds that need to be taken with food, so I'm sure i must be due some brekkie. So i may have to finish my blog now and continue with another one a bit later.
You have to get your priorities right in life. Am i right?
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