30.4.16
The weekend again. Im so tired i don't know what to do with myself.
Why?
I went out last night. Had a whale of a time. I tried not to eat too much cos i still feel bloated in the evenings. So i had a burger without the bun, just the salad and pickles and a few chips. It was divine. And i said no to dessert! Go me. Ill be a size 10 before i know it, but don't hold your breath. My clothes are getting more and more fitted. Each time i recover from a round of chemo i find i need to eat things that set my mouth ablaze. My taste buds are like exploding fireworks, and i do exaggerate quite a lot there. My buds don't seem to fully recover, but when you actually taste something nice it feels like its multiplied by 100.
And i had a coffee. I went off coffee after the first round of chemo. Ive just had black tea or water ever since. Im gonna be a devil this morning and try a black coffee. I love being a rebel.
Anyway, where was i? Oh yes, the lovely Kelly drove me to Lyndhurst for a Rock Choir prefects meeting, including Chris, our leader. Oh we had a giggle. Theres a few things in the pipeline, but nothing i can tell you about otherwise i would have to kill you, but needless to say i really enjoyed myself. And i enjoyed the car journey with Kelly even if we had to sit in the cold cos of my thermostat malfunction.
So today i will be mainly relaxing (and dozing off). I may attempt a couple of small jobs in the garden, i may not! Either way i need to keep busy later in the day cos i always sleep better if I've had company in the evening, or gone out for the evening.
Anyone got a miners helmet so i can dig a veg patch at 8pm tonight?
Saturday 30 April 2016
Wednesday 27 April 2016
27.4.16
To ring the bell or not to ring the bell...that is the question.
When i finished chemo in 2014, the highlight was to ring the bell. It signified the end of the treatment, the joy of knowing you'd beaten it (hopefully!), or maybe for some people, the acceptance that you'd finished chemo that was just to make life a little better for you until sadly you left this mortal coil.
Radiotherapy has a bell!
Last time i rang the bell i was told i was in complete remission. How wrong were they? My cancer comes under the category of 'chemo resistant'.
When i finish radiotherapy i know i still have to go through the chemo and stem cell transplant. I really don't feel like celebrating my last radio with a quick ding dong while everyone cheers and claps. Its not the end of my treatment. I just want to quietly walk out of the department after saying goodbye to all the lovely people that I've met there, every morning for 15 days. Some of them are wicked, such a good sense of humour, a few of them are very poorly. I want to walk out with my 'skechers go walk' shoes clicking and squeaking on the vinyl flooring and making my arrival and departure so obvious, as they do every morning. Everyone stops and stares. I couldn't be more obvious if i had speakers on my head blaring out 'Staying Alive' or 'The Final Countdown'.
Am i wrong to be a party pooper in this way?
Do i care?
The staff have been lovely, even when pulling my pants down on the bed and not warning me! Friendly, caring, interested, understanding. Many adjectives for them, and for the extra staff sat on the table who stay in the room when the other staff run for the hills when the 'beam is on'.
When you arrive you watch the tv screen showing hospital info waiting for the screen shot that says whether your machine is running on time.
'Varian 1 is running on time'.
How can it be running late at 9am?
The last 2 days I've gone in on time, if not early, and one of my radio mates told me he was next and he had to wait for hours. He didn't get home till 1pm. What happened? Did i leave some sort of fall out?
Anyway, it was 'hump' day today. Half way through. And some good tunes were played for me whilst i lay waiting for action.
'I don't like reggae......i love it.' A 10CC number.
'Once i was 7 years old.' Lukas Graham. Nice lyrics!
The lovely Kelly took me today. Whilst she waited for me she went to the Harbour Hospital and got me a lovely hot chocolate. That kept me quiet all the way home. There was method in her madness.
And it was nice to beep at the junior doctors as we drove past them.
Now time to put my feet up!
To ring the bell or not to ring the bell...that is the question.
When i finished chemo in 2014, the highlight was to ring the bell. It signified the end of the treatment, the joy of knowing you'd beaten it (hopefully!), or maybe for some people, the acceptance that you'd finished chemo that was just to make life a little better for you until sadly you left this mortal coil.
Radiotherapy has a bell!
Last time i rang the bell i was told i was in complete remission. How wrong were they? My cancer comes under the category of 'chemo resistant'.
When i finish radiotherapy i know i still have to go through the chemo and stem cell transplant. I really don't feel like celebrating my last radio with a quick ding dong while everyone cheers and claps. Its not the end of my treatment. I just want to quietly walk out of the department after saying goodbye to all the lovely people that I've met there, every morning for 15 days. Some of them are wicked, such a good sense of humour, a few of them are very poorly. I want to walk out with my 'skechers go walk' shoes clicking and squeaking on the vinyl flooring and making my arrival and departure so obvious, as they do every morning. Everyone stops and stares. I couldn't be more obvious if i had speakers on my head blaring out 'Staying Alive' or 'The Final Countdown'.
Am i wrong to be a party pooper in this way?
Do i care?
The staff have been lovely, even when pulling my pants down on the bed and not warning me! Friendly, caring, interested, understanding. Many adjectives for them, and for the extra staff sat on the table who stay in the room when the other staff run for the hills when the 'beam is on'.
Here they are! Always stay with me whilst I'm being fried!
And here she is...Varian 1, and you can see the lovely table that i perch precariously on!
The only down side is the wait. Ive only had this once or twice in the 6 appointments so far.When you arrive you watch the tv screen showing hospital info waiting for the screen shot that says whether your machine is running on time.
'Varian 1 is running on time'.
How can it be running late at 9am?
The last 2 days I've gone in on time, if not early, and one of my radio mates told me he was next and he had to wait for hours. He didn't get home till 1pm. What happened? Did i leave some sort of fall out?
Anyway, it was 'hump' day today. Half way through. And some good tunes were played for me whilst i lay waiting for action.
'I don't like reggae......i love it.' A 10CC number.
'Once i was 7 years old.' Lukas Graham. Nice lyrics!
The lovely Kelly took me today. Whilst she waited for me she went to the Harbour Hospital and got me a lovely hot chocolate. That kept me quiet all the way home. There was method in her madness.
And it was nice to beep at the junior doctors as we drove past them.
Now time to put my feet up!
Sunday 24 April 2016
23.4.16
Its saturday. A radiotherapy free day. And I'm mighty happy about that. I must say the last couple of days the treatment has been quicker and therefore a lot more tolerable. But Im hoping no radio = no symptoms.
And over the last few days I've been out to tea and cakey with my 'driver' which was nice. The response to my request for transport to the hospital has been unbelievable. I never knew i had such caring lovely friends.
So following saturday and sunday without radiotherapy, when i thought i would lose the symptoms, I'm sad to find I'm still nauseous and I'm very dizzy. I can't move too quickly otherwise the room follows a few minutes later making me feel like I've had some of the falling over juice.
So despite watching Jamie Olivers 15 minute meals, i find myself back on the Heinz tinned spaghetti bolognaise - its a 2 minute meal!
And being told to rest.....i have no choice. I fall asleep about 6 times during the day and each time i wake up, i feel like I've been drugged. I feel so rough for about half an hour, and then i recover to my normal feeling of rough! Oh whinge, whinge whinge. Anyone would think I'm having a hard time!
Sunday morning, actually its afternoon now, i had crunchy nut cornflakes in bed with a cup of black tea, and now, after an anti sickness tab, I've dragged myself downstairs to the lounge hoping i'll feel more normal. The sky is blue with white fluffy clouds, one shaped like a dog. The birds are flying round my garden and the wind is blowing my trees and bushes, making me aware of all the pruning i have to do. Theres so much i want to do. I want to get the table and chairs out, and erect (haha i said erect!) a small portable plastic green house in my lean-to where i can grow lettuce, tomatoes, cucumber, etc so that i can eat healthier. Maybe a few herbs growing in the garden too.
So many plans, so little energy. Roll on mid june.
So tomorrow......Morag and Jilly sitting in a tree, R A D I O T H E R A P EEEEE, strap me to a bed and raise my arms up high, and any lymphoma cells can kiss my a** goodbye!
Ha ha that tickled me.
Good bye weekend, see you in 5 days.
Its saturday. A radiotherapy free day. And I'm mighty happy about that. I must say the last couple of days the treatment has been quicker and therefore a lot more tolerable. But Im hoping no radio = no symptoms.
And over the last few days I've been out to tea and cakey with my 'driver' which was nice. The response to my request for transport to the hospital has been unbelievable. I never knew i had such caring lovely friends.
So following saturday and sunday without radiotherapy, when i thought i would lose the symptoms, I'm sad to find I'm still nauseous and I'm very dizzy. I can't move too quickly otherwise the room follows a few minutes later making me feel like I've had some of the falling over juice.
So despite watching Jamie Olivers 15 minute meals, i find myself back on the Heinz tinned spaghetti bolognaise - its a 2 minute meal!
And being told to rest.....i have no choice. I fall asleep about 6 times during the day and each time i wake up, i feel like I've been drugged. I feel so rough for about half an hour, and then i recover to my normal feeling of rough! Oh whinge, whinge whinge. Anyone would think I'm having a hard time!
Sunday morning, actually its afternoon now, i had crunchy nut cornflakes in bed with a cup of black tea, and now, after an anti sickness tab, I've dragged myself downstairs to the lounge hoping i'll feel more normal. The sky is blue with white fluffy clouds, one shaped like a dog. The birds are flying round my garden and the wind is blowing my trees and bushes, making me aware of all the pruning i have to do. Theres so much i want to do. I want to get the table and chairs out, and erect (haha i said erect!) a small portable plastic green house in my lean-to where i can grow lettuce, tomatoes, cucumber, etc so that i can eat healthier. Maybe a few herbs growing in the garden too.
So many plans, so little energy. Roll on mid june.
So tomorrow......Morag and Jilly sitting in a tree, R A D I O T H E R A P EEEEE, strap me to a bed and raise my arms up high, and any lymphoma cells can kiss my a** goodbye!
Ha ha that tickled me.
Good bye weekend, see you in 5 days.
Wednesday 20 April 2016
20.4.16
Good morning. Ive been a bad girl and not blogged for a whole week, not cos i have nothing to say, but cos i feel soooooooo washed out.
This torment is getting relentless. One thing after another. No time to recover in between tortures.
So the torture of the moment is radiotherapy.
I arrived on monday hoping it would be as i expected. On the bed. Line up. Quick flash. You're free to go. But in true Jilly style, i had to be awkward. I got on the bed/table. A thin plastic/perspex sheet, it can't be soft otherwise it can change your position...and we don't want that. We don't want the beams getting to an important organ. They very quickly realised my tattoos (for radiotherapy, not my jewel on my shoulder or my cancer badge on my wrist) were not quite right. They couldn't line me up. Simon, another colleague was called and i was so worried they were gonna have to start again and do the CT scan and i was thinking of my bruised arms from the stem cell harvest attempts at cannulisation, so i was stressed, so flipping stressed. So Simon came and i was shunted, although i had to shunt myself which isn't easy when I'm stiff and achey before i even start. I moved up the bed and then couldn't place my arms in the position i was supposed to so had my hands on my head.....very similar to when you're in front of the firing squad!
Some foam wedges were put under my top arms and i was told to relax! Try it, its not easy. The wedges didn't work and my arms were precariously wobbling about and shaking for between 15 to 30 minutes. Really.......try it, its almost impossible. However, that was more pleasurable than a CT scan, so i shan't complain!
Number 2 was better, but still takes more time than i expected. My arms still shake but thats something ill have to put up with. I try to imagine I'm laying on a warm sandy beach, with the waves lapping at my feet. What tickles me is when I'm laying on the table and i have my leggings pulled down (their request, I'm not doing it cos I'm an exhibitionist!), they pull my pants down a little without even asking! How very rude! You don't normally get that on a warm sandy beach!
What i do like about it is the waiting room. Everyone greets everyone and they're all so friendly. Its the same faces. I presume the people are like me, having 3 weeks or so of radiotherapy and at the similar time. Theres a lot of joking and laughing, and they're all accepting of their situation. They all discuss their radiotherapy symptoms, and I've found the nausea is common! Yay!
What I'm surprised at is the tiredness. When i get home i lay on the sofa and I'm unconscious in seconds.
Number 3 is now gone, so only 12 left. Lets see if i can cope with them all!
Good morning. Ive been a bad girl and not blogged for a whole week, not cos i have nothing to say, but cos i feel soooooooo washed out.
This torment is getting relentless. One thing after another. No time to recover in between tortures.
So the torture of the moment is radiotherapy.
I arrived on monday hoping it would be as i expected. On the bed. Line up. Quick flash. You're free to go. But in true Jilly style, i had to be awkward. I got on the bed/table. A thin plastic/perspex sheet, it can't be soft otherwise it can change your position...and we don't want that. We don't want the beams getting to an important organ. They very quickly realised my tattoos (for radiotherapy, not my jewel on my shoulder or my cancer badge on my wrist) were not quite right. They couldn't line me up. Simon, another colleague was called and i was so worried they were gonna have to start again and do the CT scan and i was thinking of my bruised arms from the stem cell harvest attempts at cannulisation, so i was stressed, so flipping stressed. So Simon came and i was shunted, although i had to shunt myself which isn't easy when I'm stiff and achey before i even start. I moved up the bed and then couldn't place my arms in the position i was supposed to so had my hands on my head.....very similar to when you're in front of the firing squad!
Some foam wedges were put under my top arms and i was told to relax! Try it, its not easy. The wedges didn't work and my arms were precariously wobbling about and shaking for between 15 to 30 minutes. Really.......try it, its almost impossible. However, that was more pleasurable than a CT scan, so i shan't complain!
Number 2 was better, but still takes more time than i expected. My arms still shake but thats something ill have to put up with. I try to imagine I'm laying on a warm sandy beach, with the waves lapping at my feet. What tickles me is when I'm laying on the table and i have my leggings pulled down (their request, I'm not doing it cos I'm an exhibitionist!), they pull my pants down a little without even asking! How very rude! You don't normally get that on a warm sandy beach!
What i do like about it is the waiting room. Everyone greets everyone and they're all so friendly. Its the same faces. I presume the people are like me, having 3 weeks or so of radiotherapy and at the similar time. Theres a lot of joking and laughing, and they're all accepting of their situation. They all discuss their radiotherapy symptoms, and I've found the nausea is common! Yay!
What I'm surprised at is the tiredness. When i get home i lay on the sofa and I'm unconscious in seconds.
Number 3 is now gone, so only 12 left. Lets see if i can cope with them all!
Wednesday 13 April 2016
13.4.16
Im happy to be reporting from my lounge on a beautifully sunny day. A day where Chris and Chloe are visiting. A day where at one stage i thought id still be in the Dorset Cancer Centre being mauled and abused.
Needless to say my stem cells were an acceptable amount and i was de-lined and sent home.
Removal of the line was the next bit of anxiety for me. How was it gonna feel? I didn't expect it to be excruciating, i think i just wanna be left alone. Its been quite a few weeks of being pumped with stuff and manhandled. Anyway, the removal. It wasn't bad, just felt like someone was pulling something out of the vein in my groin......and they were! It was about 6 inches long (for any men reading, thats normally 3 inches for you!) and it was quite girthy!!! Sorry i had to use that word after the 3 inch comment. It makes me shudder thinking about it, and i realise at some stage the one in my chest will have to be removed, and that ones had time to make itself feel at home. Never mind, i'll panic about that one when it happens.
And the lovely Lyn and Martin came to pick me up at about 9.30 which was so nice of them.
Oh it was absolute heaven to be home.
And its quite interesting seeing all my bruises today. Ive been doing that thing where you try to interpret something from inkblots, the Rorschach test. So far i have seen a plate of spaghetti bolognaise, a dog, and a mosquito. One is starting to look remarkably like my cross stitch of the map of USA. That could be handy if i ever go there again.
Im happy to be reporting from my lounge on a beautifully sunny day. A day where Chris and Chloe are visiting. A day where at one stage i thought id still be in the Dorset Cancer Centre being mauled and abused.
Needless to say my stem cells were an acceptable amount and i was de-lined and sent home.
Removal of the line was the next bit of anxiety for me. How was it gonna feel? I didn't expect it to be excruciating, i think i just wanna be left alone. Its been quite a few weeks of being pumped with stuff and manhandled. Anyway, the removal. It wasn't bad, just felt like someone was pulling something out of the vein in my groin......and they were! It was about 6 inches long (for any men reading, thats normally 3 inches for you!) and it was quite girthy!!! Sorry i had to use that word after the 3 inch comment. It makes me shudder thinking about it, and i realise at some stage the one in my chest will have to be removed, and that ones had time to make itself feel at home. Never mind, i'll panic about that one when it happens.
And the lovely Lyn and Martin came to pick me up at about 9.30 which was so nice of them.
Oh it was absolute heaven to be home.
And its quite interesting seeing all my bruises today. Ive been doing that thing where you try to interpret something from inkblots, the Rorschach test. So far i have seen a plate of spaghetti bolognaise, a dog, and a mosquito. One is starting to look remarkably like my cross stitch of the map of USA. That could be handy if i ever go there again.
Tuesday 12 April 2016
12.4.16
The excitement of my last GCSF jab last night has done nothing to help me sleep. Its half past flipping 4 and my eyes are wide open. Amanda Lamb is selling houses on TV and i can hear the slight rumble of Sam snoring down stairs.
Today is stem cell harvest day. I feel i should take a wicker basket to hospital with me to collect my little life savers along with a bunch of carrots, some onions and large bag of potatoes. Sadly I don't think its gonna be as much fun as harvesting a busy allotment. Although more important!
Every little thing leads to anxiety, something I've not really been used to in the past. Last nights jab let the anxiety go out of the front door with the 2 lovely nurses as they left. I was so happy i even did a little dance, as well as partaking in a bag of mini cheddars. Eating at 10pm! Not something i allow myself to do cos of feeling so stuffed all the time. Im hoping by tonight i will feel a new woman.
The anxiety returned pretty quickly though.
The night terrors are back, albeit fairly mild. I have woken the last 3 nights panicking cos i haven't taken my meds........here we go again. I don't take any meds at nighttime. Last night i recall waking, putting on the light and searching for a push button? I seemed to remember i should have pressed it before bed. It really makes no sense. And it takes a while for my sleepy head to realise I'm being an idiot.
So here i am. The alarm is set for 7.00am, something quite alien to me, and I'm wide awake now. Time to think about what the day holds for me. Im hoping i don't have to have the huge cannula inserted into my arm, hoping my kick man line is enough. Hoping i can park close by. And hoping the procedure doesn't take too long. My desire is to get home quick whenever I'm in hospital.
Stay right there.......I'll let you know how it goes.
Ive arrived.
Im back in the Dorset Cancer Centre, catchy little name, isn't it? Its nice to see all the girls who did my chemo last time, although id rather still be at home, in bed.
Ive had bloods taken to check my stem cells are suitably prolific and waiting for the results. If they come back too low, i'll eat my spleen!
They came back at 360 as opposed to the 400 last time. The acceptable amount is 15!
So i was transferred to my room where the machine had been cranked up. All the bags were in place to fulfil the procedure. Some special magic cream was applied to my inner elbow for in case they needed to cannulate me.
My Kickman line was my first problem. I was hoping it would be used but unfortunately it set the machine bleeping and alarming, regardless of the fact that they had used a wide bore line specially to accommodate the machine and its actions. So i was threatened with a cannula.
Oh what a disaster.
The cannula needed was a wide bore one - bloody mahoosive!
I was jabbed, jabbed again and then the other arm was attacked. Yes the arm that didn't have the magic cream. It was jabbed, jabbed again and then Jo (my favourite chemo nurse from my first lot of treatment) came and had a go. If anyone can do it, Jo can do it!
Nope.
Fergus came in and he had a fiddle with a tourniquet and my cubital fossa (that area on the inside of the elbow thats is commonly used for taking blood)!
He suggested i have some Medazolam to relax me, hoping that would help.
Ooh it was lovely.
It didn't work tho. My vein still had the barrier across - NO ENTRY.
A consultant anaesthetist, Chris Loew was bribed with a Kit Kat by Fergus to come and insert a femoral line.
He used ultrasound to check out my arm veins, but there was no chance he would get it in there.
I requested medazolam again. He wasn't too keen, but i managed to talk him round.
'With medazolam, you can do what you want,' i said.
Whilst i floated round the room, he inserted a femoral line.
He was lovely. Heres a picture of the little darling. I took the photo when i was high! I did ask his permission about 10 minutes later when i was more normal, whatever that is.
And heres the line, and oh the shame, you can see some hairs! Ive said before i look like a tarantula, and heres the proof! Please forgive me, i know not what i do.
Stem cell retrieval started and the machine didn't play ball. It kept making noises and sending messages.
Eventually it started to do its job. The bag for the plasma filled up, and the bag with the little stem cells filled up.
Stem cells crossed.
The excitement of my last GCSF jab last night has done nothing to help me sleep. Its half past flipping 4 and my eyes are wide open. Amanda Lamb is selling houses on TV and i can hear the slight rumble of Sam snoring down stairs.
Today is stem cell harvest day. I feel i should take a wicker basket to hospital with me to collect my little life savers along with a bunch of carrots, some onions and large bag of potatoes. Sadly I don't think its gonna be as much fun as harvesting a busy allotment. Although more important!
Every little thing leads to anxiety, something I've not really been used to in the past. Last nights jab let the anxiety go out of the front door with the 2 lovely nurses as they left. I was so happy i even did a little dance, as well as partaking in a bag of mini cheddars. Eating at 10pm! Not something i allow myself to do cos of feeling so stuffed all the time. Im hoping by tonight i will feel a new woman.
The anxiety returned pretty quickly though.
The night terrors are back, albeit fairly mild. I have woken the last 3 nights panicking cos i haven't taken my meds........here we go again. I don't take any meds at nighttime. Last night i recall waking, putting on the light and searching for a push button? I seemed to remember i should have pressed it before bed. It really makes no sense. And it takes a while for my sleepy head to realise I'm being an idiot.
So here i am. The alarm is set for 7.00am, something quite alien to me, and I'm wide awake now. Time to think about what the day holds for me. Im hoping i don't have to have the huge cannula inserted into my arm, hoping my kick man line is enough. Hoping i can park close by. And hoping the procedure doesn't take too long. My desire is to get home quick whenever I'm in hospital.
Stay right there.......I'll let you know how it goes.
Ive arrived.
Im back in the Dorset Cancer Centre, catchy little name, isn't it? Its nice to see all the girls who did my chemo last time, although id rather still be at home, in bed.
Ive had bloods taken to check my stem cells are suitably prolific and waiting for the results. If they come back too low, i'll eat my spleen!
They came back at 360 as opposed to the 400 last time. The acceptable amount is 15!
So i was transferred to my room where the machine had been cranked up. All the bags were in place to fulfil the procedure. Some special magic cream was applied to my inner elbow for in case they needed to cannulate me.
My Kickman line was my first problem. I was hoping it would be used but unfortunately it set the machine bleeping and alarming, regardless of the fact that they had used a wide bore line specially to accommodate the machine and its actions. So i was threatened with a cannula.
Oh what a disaster.
The cannula needed was a wide bore one - bloody mahoosive!
I was jabbed, jabbed again and then the other arm was attacked. Yes the arm that didn't have the magic cream. It was jabbed, jabbed again and then Jo (my favourite chemo nurse from my first lot of treatment) came and had a go. If anyone can do it, Jo can do it!
Nope.
Fergus came in and he had a fiddle with a tourniquet and my cubital fossa (that area on the inside of the elbow thats is commonly used for taking blood)!
He suggested i have some Medazolam to relax me, hoping that would help.
Ooh it was lovely.
It didn't work tho. My vein still had the barrier across - NO ENTRY.
A consultant anaesthetist, Chris Loew was bribed with a Kit Kat by Fergus to come and insert a femoral line.
He used ultrasound to check out my arm veins, but there was no chance he would get it in there.
I requested medazolam again. He wasn't too keen, but i managed to talk him round.
'With medazolam, you can do what you want,' i said.
Whilst i floated round the room, he inserted a femoral line.
He was lovely. Heres a picture of the little darling. I took the photo when i was high! I did ask his permission about 10 minutes later when i was more normal, whatever that is.
And heres the line, and oh the shame, you can see some hairs! Ive said before i look like a tarantula, and heres the proof! Please forgive me, i know not what i do.
Stem cell retrieval started and the machine didn't play ball. It kept making noises and sending messages.
Eventually it started to do its job. The bag for the plasma filled up, and the bag with the little stem cells filled up.
These are a very few stem cells. Im not hoping to fill the whole bag, but you never can tell.
This is a view of the machine in action. The left bag is heparin which mixes with the blood before its returned to stop it clotting, the next i think is just saline. The little one in the middle I've forgotten! Don't forget i was high for a period of this procedure. The next is my plasma and the last one the stem cells, possibly a little too red cos the machine couldn't find the right level being as there was soooooooo many stem cells.
And whilst I'm posting photos......heres one of the man himself, Dr Jack, and Sammie one of the lovely nurses - although thats another story!! Suffice to say she doesnt like it when her hubby snores. She's been known to throw things!!! Ill leave it there.
Isn't he lovely? It looks in this picture as if he's lovingly cooked me a meal and is handing over the plate, either that or these are the divorce papers for his wife!
Oh god if he ever read this blog and the comments i make about him, he'd be mortified, and so would I.
Anyway, long after Fergus and Chris escaped, Sammie and Clair, the specialist nurses weren't convinced i was getting good quality retrieval.
To cut a long story short, i have been admitted to Sandbanks ward. Im awaiting a telephone call to tell me if enough cells were taken. If there was enough, they will remove my line and send me home. If there wasn't enough, i have to stay in overnight and do it all again!Stem cells crossed.
Sunday 10 April 2016
9.4.16
Why do i save everything for best? Ive done it all my life. I can quite honestly say I've bought stuff and its stayed in my wardrobe for years in some cases, whilst i save it for best.
Mary rang me yesterday, my nursey friend. We always end up in tears of laughter, unable to catch our breath, usually for something silly. Don't you just love friends like that? She's the reason I'm questioning saving stuff for best. Don't know how we got onto that subject, but we always go off at a tangent. She saves stuff too.
It made me think i should use all my 'best' stuff now, if it fits of course!
I made a patchwork quilt about 20 years ago, and I've never used it. So yesterday i changed my bed.
Why do i save everything for best? Ive done it all my life. I can quite honestly say I've bought stuff and its stayed in my wardrobe for years in some cases, whilst i save it for best.
Mary rang me yesterday, my nursey friend. We always end up in tears of laughter, unable to catch our breath, usually for something silly. Don't you just love friends like that? She's the reason I'm questioning saving stuff for best. Don't know how we got onto that subject, but we always go off at a tangent. She saves stuff too.
It made me think i should use all my 'best' stuff now, if it fits of course!
I made a patchwork quilt about 20 years ago, and I've never used it. So yesterday i changed my bed.
After a good nights sleep i know why i haven't used it! See the top bit where the pillows are? Theres a frill. It got on my nerves tickling my nose, and the bottom bit, i hadn't sewn on buttons or velcro or anything, so I'm expecting my quilt to fall out at any time during the night! Listen out for the blue language!
My other catch up project is a cross stitch that i started about 15 years ago. I took it to hospital last time and i actually did some after having put it down for about 10 years. It would be nice to finish it and frame it and put it on the wall somewhere!.
Still got a lot to do. A border all the way round in the fashion of stars and stripes and a load of buildings and signs. Its gonna take a while, so i better get on with it. A new pair of eyes would be beneficial.
I never save food! Strange that. If its in the fridge, its fair game. And i have a bit of an OCD thing where i have to tidy it up. I can't leave it in the fridge, if it can be eaten....now.
Saying that, since this recent treatment, i leave things for ages, even to go off and i have to throw it. I just don't have the same desperation to eat it.
But theres one thing that i can't save........my tears.
I can't help but cry at everything, not necessarily sad.
My most recent show of emotion was the orchestra that played on Britains Got Talent. They played/sang Don't stop me Now which we have covered at Rock Choir.
It was amazing and i really enjoyed.
My reaction?
'That was amazing. I would press the gold buzzer for that.' Then i erupted into tears.
Luckily i was alone, therefore my embarrassment was saved!
Thursday 7 April 2016
6.4.16
I am feeling slightly better, but as the day has gone on I've felt bloated, so uncomfortable. The horrid taste seems to get worse as the day goes on too, and my mouth is very watery. I feel like i want to keep spitting, but not being a camel, i try to desist.
As i sit here waiting for nursey to come and give me injections numbers 7, 8 and 9, and i try to stay awake, not wishing to spook my chance of a good nights sleep, i decided to google the symptoms of the jabs!
Oh Holy Mother of Mary.
I dont stand a chance.
Filgastrim: injection injectable, injection solution
I am feeling slightly better, but as the day has gone on I've felt bloated, so uncomfortable. The horrid taste seems to get worse as the day goes on too, and my mouth is very watery. I feel like i want to keep spitting, but not being a camel, i try to desist.
As i sit here waiting for nursey to come and give me injections numbers 7, 8 and 9, and i try to stay awake, not wishing to spook my chance of a good nights sleep, i decided to google the symptoms of the jabs!
Oh Holy Mother of Mary.
I dont stand a chance.
Filgastrim: injection injectable, injection solution
As well as its needed effects, filgrastim (the active ingredient contained in Neupogen) may cause unwanted side effects that require medical attention.
If any of the following side effects occur while taking filgrastim, check with your doctor immediately:
More common- Abdominal or stomach pain
- bleeding gums
- bleeding, blistering, burning, coldness, discoloration of the skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, ulceration, or warmth at the injection site
- blood in the urine or stools
- bloody nose
- cough
- coughing up blood
- diarrhea
- difficult or labored breathing
- difficulty with swallowing
- dizziness
- facial swelling
- feeling of fullness
- fever or chills
- headache
- increased menstrual flow or vaginal bleeding
- lower back or side pain
- nausea or vomiting
- nosebleeds
- pain in the back, ribs, arms, or legs
- pain spreading to the left shoulder
- painful or difficult urination
- pale skin
- paralysis
- pinpoint red or purple spots on the skin
- prolonged bleeding from cuts
- red or black, tarry stools
- red or dark brown urine
- skin rash
- sore throat
- sores, ulcers, or white spots on the lips, tongue, or inside the mouth
- tightness in the chest
- troubled breathing with exertion
- unusual bleeding or bruising
- unusual tiredness or weakness Less common
- Blurred vision
- chest pain
- nervousness
- pounding in the ears
- slow or fast heartbeats
No wonder i don't feel much like getting out of bed. I tend to flounder in my bed till I've taken all medication, had a couple of digestives and a cup of weird tasting tea. Till i know I'm safe from anything negative. To be honest, i don't know what i do!
Although the last few days I've been organising my route to hospital for my radiotherapy. I requested on my page on FB for any help with transport. The amount of people who have offered astounded me. Theres some very nice people out there.
Another of the things i actually do, is think of food. My only vice at the mo. And even that i can't do properly cos of taste loss, watery mouth, nausea, lethargy, etc etc etc. I spend my time thinking what id like to eat and then end up eating a tin of Heinz spaghetti bolognaise, which is really nasty, but it does the trick being carbohydrate and being that i don't have to cook cos i haven't got the energy. I spend time watching Masterchef, Saturday Kitchen and stuff like that. You don't know what a let down it is to have spag bol, out of a tin. Putting my own stamp on it is squirting a bit of tomato sauce into it before blasting it in the microwave and stuffing it down before going back to bed.
And of course, this full feeling stops me eating too much at any time. I hate this full feeling, especially cos i haven't benefited by stuffing my face with a delicious, exquisite meal.
Well last night i had the dream of a 'treat'. Sam brought 2 Ben and Jerrys Wich ice creams. He had one and told me the other one was for me.
I waited till the nurse came and went at 10pm and then decided i couldn't possibly eat it then cos i was too full and it was bed time, and so on and so forth of july. So i slipped into a nights sleep dreaming of this treat that i could, if i really wanted, have for breakfast, rather than the crunchy nut cornflakes that usually wake me up in the mornings.
I dashed (term used loosely) downstairs and put the kettle on. I opened the freezer door, mouth watering, but not in my usual nauseous way, in an excited 'i will be fulfilled' way.
I couldn't find it!
Oh noooooooooooo!
I bet Sam had it.
I texted him at work.
'Its in the middle drawer, not in the box.'
Do you know, i was about to cry, such was my disappointment.
Another of the things i actually do, is think of food. My only vice at the mo. And even that i can't do properly cos of taste loss, watery mouth, nausea, lethargy, etc etc etc. I spend my time thinking what id like to eat and then end up eating a tin of Heinz spaghetti bolognaise, which is really nasty, but it does the trick being carbohydrate and being that i don't have to cook cos i haven't got the energy. I spend time watching Masterchef, Saturday Kitchen and stuff like that. You don't know what a let down it is to have spag bol, out of a tin. Putting my own stamp on it is squirting a bit of tomato sauce into it before blasting it in the microwave and stuffing it down before going back to bed.
And of course, this full feeling stops me eating too much at any time. I hate this full feeling, especially cos i haven't benefited by stuffing my face with a delicious, exquisite meal.
Well last night i had the dream of a 'treat'. Sam brought 2 Ben and Jerrys Wich ice creams. He had one and told me the other one was for me.
I waited till the nurse came and went at 10pm and then decided i couldn't possibly eat it then cos i was too full and it was bed time, and so on and so forth of july. So i slipped into a nights sleep dreaming of this treat that i could, if i really wanted, have for breakfast, rather than the crunchy nut cornflakes that usually wake me up in the mornings.
I dashed (term used loosely) downstairs and put the kettle on. I opened the freezer door, mouth watering, but not in my usual nauseous way, in an excited 'i will be fulfilled' way.
I couldn't find it!
Oh noooooooooooo!
I bet Sam had it.
I texted him at work.
'Its in the middle drawer, not in the box.'
Do you know, i was about to cry, such was my disappointment.
Oh Yeah!!
Mmmmmm...
Bollocks!
Monday 4 April 2016
5.4.16
And its a happy birthday to my boy Sam. Ive got him nothing. No card, no prezzy, no cake, and to be honest with you, i don't care. I am on the way back up, ish, but still feeling rough.
The worst bit, i think, is the horrid taste in my mouth. Constantly. Sometimes i sit with my mouth open encouraging fresh air. I look like a turtle. Maybe some shake 'n' vac would work. My mouth is swollen and feels like it has an overcoat on. Imagine what your tongue would feel like if you botoxed it all over, and then multiply that feeling by 10. Thats it!
The next thing is the waist pain! Goodness knows why? I feel like i have a belt strapped tightly round my waist and its causing a lot of discomfort. Chemo is so indiscriminate. It causes the weirdest of symptoms that you would never expect.
My skin is so sensitive. If i have an itch, i have to remember not to. It feels like I'm gouging out my flesh.
Sore eyes. I have to have 10 days of steroid eyedrops cos it can damage the eyes. These drops give me anxiety, as does everything else. They're not bad but the thought of doing them makes me feel nauseous. Purely psychological. Everything makes me feel nauseous. Even taking paracetamol can do it. I can understand anyone who needs meds for the anxiety.
Nausea. Constant mild nausea. Mouth watering and keeps me reaching for my digestive biscuits which seems to help the issue. I don't know what id do if i ran out of my little life savers.
Headaches which exacerbate the nausea. I try to stay on top of headaches. Normally i would ignore a headache, but not these days.
Ringing in the ears. Another weird one. I can be sat minding my own business when suddenly theres bells chiming in my ears. Positively a wedding going on. It only lasts a short while, like most weddings (ooh cynical) but it finishes with a crackle.
And of course, theres the steroid swelling. It takes a while for this little darling to go back to normal. I finished steroids last friday and i still have to walk sideways to get through the door cos my face is so puffy
Sensitive head! Oh wow, this ones a corker. I have bristles where hair once was. And because of that, i have a cold head, a hot head, a cold head, a hot head....... the hat is on, off, on, off..... If my head gets cold i get a headache, a real nauseous one. Then i put the hat on and i get too hot. My head itches a little and of course if i scratch or rub it it flipping hurts. Wouldn't it be nice if i rubbed it and a big blue genie came out.
'You're wish is my command.'
What would i ask for i wonder?
How many times have i thought of this? I could ask for a bigger more stylish house. A jaguar XK. A round the world trip. Maybe a house for each of my sons with no mortgage and bills. Pay off my friends mortgages. Money would buy all this. The one thing it can't buy is health!
'Mr Genie, i would like normal sized lymph glands please, and whilst you're there can you ensure everything stays the normal size for another 30 years or so, and maybe my family and friends could do with body organ normality.'
Or..... just cure cancer!
I remember many years ago my dad telling me a joke about a trappist monk (they take a vow of silence). Every 5 years they were allowed to see the Abbott and talk about something. The first 5 years passed and the monk saw the abbott and was asked what he would like to talk about. The monk said,
'The bed. it is the most uncomfortable lumpy bed and its keeping me awake every night.' 5 years later, the time came round and the monk was asked what he would like to talk about.
'The windows. They are so draughty and it gives me a painful back.' Another 5 years, another chat. 'The food is not to my taste, i am losing weight. I am going to have to leave the order.'
'Thank god for that. In the last 15 years all you've done is moan!'
Thats me! All i do is moan, and all i can do is apologise. Im sure in a few days i will feel a bit better and stop my whinging......till the next part of the process. But one day, it will all be over! Its hard to believe, but it will be. Never will i moan again!
And its a happy birthday to my boy Sam. Ive got him nothing. No card, no prezzy, no cake, and to be honest with you, i don't care. I am on the way back up, ish, but still feeling rough.
The worst bit, i think, is the horrid taste in my mouth. Constantly. Sometimes i sit with my mouth open encouraging fresh air. I look like a turtle. Maybe some shake 'n' vac would work. My mouth is swollen and feels like it has an overcoat on. Imagine what your tongue would feel like if you botoxed it all over, and then multiply that feeling by 10. Thats it!
The next thing is the waist pain! Goodness knows why? I feel like i have a belt strapped tightly round my waist and its causing a lot of discomfort. Chemo is so indiscriminate. It causes the weirdest of symptoms that you would never expect.
My skin is so sensitive. If i have an itch, i have to remember not to. It feels like I'm gouging out my flesh.
Sore eyes. I have to have 10 days of steroid eyedrops cos it can damage the eyes. These drops give me anxiety, as does everything else. They're not bad but the thought of doing them makes me feel nauseous. Purely psychological. Everything makes me feel nauseous. Even taking paracetamol can do it. I can understand anyone who needs meds for the anxiety.
Nausea. Constant mild nausea. Mouth watering and keeps me reaching for my digestive biscuits which seems to help the issue. I don't know what id do if i ran out of my little life savers.
Headaches which exacerbate the nausea. I try to stay on top of headaches. Normally i would ignore a headache, but not these days.
Ringing in the ears. Another weird one. I can be sat minding my own business when suddenly theres bells chiming in my ears. Positively a wedding going on. It only lasts a short while, like most weddings (ooh cynical) but it finishes with a crackle.
And of course, theres the steroid swelling. It takes a while for this little darling to go back to normal. I finished steroids last friday and i still have to walk sideways to get through the door cos my face is so puffy
Sensitive head! Oh wow, this ones a corker. I have bristles where hair once was. And because of that, i have a cold head, a hot head, a cold head, a hot head....... the hat is on, off, on, off..... If my head gets cold i get a headache, a real nauseous one. Then i put the hat on and i get too hot. My head itches a little and of course if i scratch or rub it it flipping hurts. Wouldn't it be nice if i rubbed it and a big blue genie came out.
'You're wish is my command.'
What would i ask for i wonder?
How many times have i thought of this? I could ask for a bigger more stylish house. A jaguar XK. A round the world trip. Maybe a house for each of my sons with no mortgage and bills. Pay off my friends mortgages. Money would buy all this. The one thing it can't buy is health!
'Mr Genie, i would like normal sized lymph glands please, and whilst you're there can you ensure everything stays the normal size for another 30 years or so, and maybe my family and friends could do with body organ normality.'
Or..... just cure cancer!
I remember many years ago my dad telling me a joke about a trappist monk (they take a vow of silence). Every 5 years they were allowed to see the Abbott and talk about something. The first 5 years passed and the monk saw the abbott and was asked what he would like to talk about. The monk said,
'The bed. it is the most uncomfortable lumpy bed and its keeping me awake every night.' 5 years later, the time came round and the monk was asked what he would like to talk about.
'The windows. They are so draughty and it gives me a painful back.' Another 5 years, another chat. 'The food is not to my taste, i am losing weight. I am going to have to leave the order.'
'Thank god for that. In the last 15 years all you've done is moan!'
Thats me! All i do is moan, and all i can do is apologise. Im sure in a few days i will feel a bit better and stop my whinging......till the next part of the process. But one day, it will all be over! Its hard to believe, but it will be. Never will i moan again!
Friday 1 April 2016
1.4.16
April Fools Day!
I shall be playing no pranks, not in the mood.
I haven't blogged much whilst in hospital cos I've felt washed out.
Today is home day, and I'm looking forward to getting home, but not looking forward to feeling rough for a few days as the steroids leave me. So if you hear nothing for a while, now you know why. When I'm back on line, you know I'm on the way back up.
I don't feel jocular today, don't feel like joking. Just want to be unattached from my drip, get my radiotherapy assessment (with CT scan) done and go home and be left alone.
I do wish i could say, 'Haha, april fool.....i feel great,' but i really don't.
So im gonna go and wallow in self pity for a while.
Hopefully humour will return soon.
April Fools Day!
I shall be playing no pranks, not in the mood.
I haven't blogged much whilst in hospital cos I've felt washed out.
Today is home day, and I'm looking forward to getting home, but not looking forward to feeling rough for a few days as the steroids leave me. So if you hear nothing for a while, now you know why. When I'm back on line, you know I'm on the way back up.
I don't feel jocular today, don't feel like joking. Just want to be unattached from my drip, get my radiotherapy assessment (with CT scan) done and go home and be left alone.
I do wish i could say, 'Haha, april fool.....i feel great,' but i really don't.
So im gonna go and wallow in self pity for a while.
Hopefully humour will return soon.
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