Okay, so I'm over halfway through the radiotherapy and two thirds through the chemo. I should be punching the air, celebrating such progress, with the home run in sight. So why do I feel so lousy?
Well, although the drugs do work - to a certain extent - chemo still takes it out of you. This time I was sent away with the most powerful anti-sickness drugs, and only puked twice: the second time being just as I was entering Bart's Hospital on Thursday. They also provided a veritable plethora of supplementary medications, including some steroids, which carried the warning that they may cause suicidal thoughts. And I wondered why I'd been feeling so low all weekend!
It's now Monday morning, and I've emerged from my pit feeling very slightly less miserable, trying to take stock of my current condition, and assess what I can reasonably expect to endure for the next three weeks.
The gloopy saliva - sorry to keep going on about it - remains a major annoyance. It gets thicker and less manageable by the day. Swallowing it causes retching, so I end up constantly dribbling into a flannel, which is very attractive for all observers.
I am tired all the time: the days, just a few weeks ago, when I could could take Molly the dog for a walk three times around the park are a distant memory. I managed one circuit on Saturday, and had to come back home to sit down and recover.
In spite of the radiation pinkness, burning on the outside of my skin is not currently too bad - possibly because I have been piling on the cream - but the inside of my mouth has started to become very sore. This is exacerbated by a nice case of oral thrush on my tongue. My voice has deteriorated from a barely distinguishable honk to a completely incomprehensible whine.
(Incidentally, on the subject of thrush: when I was younger, I thought it was a sexually transmitted disease, so there always seems something vaguely shameful about contracting this particular fungal infection. When it's oral thrush, I am reminded of the old joke, of the man being told by his doctor that he has caught a venereal disease. "I must have caught it from a toilet seat", he says. "Well you must have eaten it," replies the doctor, "you've got it in the gums.")
Furthermore, I'm almost totally deaf in my right ear, and the hearing in my left ear is declining. And I seem to have added an extra petulant side to my character, which manifests itself in me shouting at loved ones, or throwing things around in a tantrum. Boy, am I fun to be around just now!
All in all, I've been feeling pretty sorry for myself, and fearing that things are going to get worse before they get better. Catherine has caught a very nasty cold, but I'm afraid that I'm reserving all my sympathy for myself just now.
Sorry this all seems to have been a bit of a whinge. I'm conscious that the more dramatic parts of my treatment - the operations, cutting, slicing, intensive care, etc. - are over, and this phase is relatively mundane. Please believe me, for all the routine that goes with the radiotherapy, it's no less unpleasant.
Back to the subject of thrush, here are ten songs about birds.
1. My Songbird - Jesse Winchester
2. Three Little Birds - Bob Marley & The Wailers
3. Little Sparrows - The Handsome Family
4. Songbird - Anais Mitchell
5. Little Bird - Eels
6. Beautiful Bluebird - Neil Young
7. When Doves Cry - Prince
8. Bird On The Wire - Leonard Cohen
9. Blue Valley Songbird - Dolly Parton
10. The Crow On The Cradle - Jackson Browne
Is anybody there?
RP
Monday 27 September 2010
Sunday 26 September 2010
Quick chemo update
Just a quick update - Rick, although feeling pretty rough, has coped with the chemo much better than last time. The super-duper anti-sickness drugs have worked for the most part, and Rick has managed to avoid another re-admittance to Bart's for re-hydration. He has spent most of the time after chemo in bed, getting up for our daily outings to the radiotherapy suite in Bart's, but hopefully the symptoms will abate over the next few days and he will be able to do the blog himself.
Catherine
Catherine
Tuesday 21 September 2010
Chemistry Class
Hello Boys and Girls
Just a quick post today, as I go for my second blast of chemo tomorrow, so may be feeling like death for the next few days. I've been promised the extra-strength, super-duper anti-emetic, but who knows what reaction it'll have. Last time I was readmitted to hospital, which nobody wants, so fingers crossed.
I've now done 15 radiotherapy sessions, out of a total of 33, so nearly halfway. today's mantra at the radiotherapy clinic was "It'll only get worse from now on". For example, when I complained of a sore throat when swallowing, I was told, "it'll only get worse from now on"; similarly, the burning of the skin around my face, the nasty, nasty gloopy saliva, and all the other side-effects, which I won't bore you with now.
Today is Catherine's birthday, and normally we would mark it with a nice meal, washed down with some fine wine. Under the circumstances, I'm afraid that wasn't possible this year, and she's spent most of the day ferrying me around various medical appointments. To make matters worse, the bracelet I had ordered didn't arrive on time, so as a present from me she had to make do with a photo of said item of jewellery. In my defence, I'd like to claim that I've had a lot on my mind, but that's no excuse.
Actually, she did have a birthday meal at the weekend, cooked as a joint effort between Lucy and Emma. The menu was a starter of roast vegetable and mozarella stack; main course was fillet steak in a whiskey jus; and dessert of Iles Flotant. With such culinary delights from the girls, I shall soon be rendered completely obsolete.
Finally, and in lieu of the normal list of songs, let me tell you about the best CD I've bought for ages. It's a compilation called "Dark Was The Night", which is part of the "Red Hot" series of albums, the proceeds of which go towards AIDS charities. This particular one is a double CD, drawn together by the nice people at 4AD. It was released in 2009, but didn't come to my attention until browsing Amazon recently. It includes some great stuff, and my highlights are "Sleepless" by The Decemberists, "I Was Young When I Left Home" by Antony Hegarty and Bryce Dessner, "Lua" by Conor Oberst and Gillian Welch, and "Inspiration Information" by the peerless Sharon Jones and The Dap Kings. There are one or two duffers - notably The Kronos Quartet's attempt to recreate the delta blues of Robert Johnson, which is as bad as it sounds, but overall it's highly recommended, and only about nine quid. Buy this album.
End of music review. Wish me luck.
R
Just a quick post today, as I go for my second blast of chemo tomorrow, so may be feeling like death for the next few days. I've been promised the extra-strength, super-duper anti-emetic, but who knows what reaction it'll have. Last time I was readmitted to hospital, which nobody wants, so fingers crossed.
I've now done 15 radiotherapy sessions, out of a total of 33, so nearly halfway. today's mantra at the radiotherapy clinic was "It'll only get worse from now on". For example, when I complained of a sore throat when swallowing, I was told, "it'll only get worse from now on"; similarly, the burning of the skin around my face, the nasty, nasty gloopy saliva, and all the other side-effects, which I won't bore you with now.
Today is Catherine's birthday, and normally we would mark it with a nice meal, washed down with some fine wine. Under the circumstances, I'm afraid that wasn't possible this year, and she's spent most of the day ferrying me around various medical appointments. To make matters worse, the bracelet I had ordered didn't arrive on time, so as a present from me she had to make do with a photo of said item of jewellery. In my defence, I'd like to claim that I've had a lot on my mind, but that's no excuse.
Actually, she did have a birthday meal at the weekend, cooked as a joint effort between Lucy and Emma. The menu was a starter of roast vegetable and mozarella stack; main course was fillet steak in a whiskey jus; and dessert of Iles Flotant. With such culinary delights from the girls, I shall soon be rendered completely obsolete.
Finally, and in lieu of the normal list of songs, let me tell you about the best CD I've bought for ages. It's a compilation called "Dark Was The Night", which is part of the "Red Hot" series of albums, the proceeds of which go towards AIDS charities. This particular one is a double CD, drawn together by the nice people at 4AD. It was released in 2009, but didn't come to my attention until browsing Amazon recently. It includes some great stuff, and my highlights are "Sleepless" by The Decemberists, "I Was Young When I Left Home" by Antony Hegarty and Bryce Dessner, "Lua" by Conor Oberst and Gillian Welch, and "Inspiration Information" by the peerless Sharon Jones and The Dap Kings. There are one or two duffers - notably The Kronos Quartet's attempt to recreate the delta blues of Robert Johnson, which is as bad as it sounds, but overall it's highly recommended, and only about nine quid. Buy this album.
End of music review. Wish me luck.
R
Tuesday 14 September 2010
Spitting In The Wind
Hello Friends
The radiotherapy continues, and the treatment itself is still not too unpleasant, although I'm certainly starting to enjoy the side-effects.
To be positive, I've now done 10 sessions, which is a smidgen over 30%. Obviously, I'd be happier to be sitting here saying it's 30% to go, but with a fair wind, and all pulling together, we just might get through this.
So, those side effects. Most noticeable, and most annoying and embarrassing, is the saliva. Basically, everyone has two sets of saliva glands: one is responsible for "thin" saliva, and the other pumps out the thick gloopy stuff. Under normal circumstances, both sets of gob combine in the mouth, for a liquid of ideal consistency,which we swallow and expel without really noticing for most of the time.
When being treated with radiotherapy, the gland which makes the thin saliva goes on holiday, so you're stuck with footballers' spit, and lots of it. Swallowing this stuff is like drinking sick, and so produces the inevitable gagging response. I think I've managed to get a total of about 6 hours sleep in the last two nights, as I keep waking up retching on the muck in my mouth. I'm told that by the end of the course of treatment, it will have taken on the consistency of chewing gum, which obviously I'm looking forward to.
Not a lot to do except grin and bear it, I'm afraid. I'm instructed to keep my mouth as clean as possible, using the nebuliser and mouth-suction frequently, and possibly sucking ice chips from time to time, to lightn the consistency, but basically I've got to put up with it. Could be worse.
Of other symptoms, I have checked with Dr Sibtain: deafness in my right ear? "That'll be the radiotherapy"; breathlessness and fatigue? "That'll be the radiotherapy"; numbness across the whole of the right side of my face? "That'll be the radiotherapy"; a powerful erection, which drains the blood from the rest of my body and lasts for six hours? "That'll be the radiotherapy".
Actually that last one was a lie, just checking you're still awake.
I haven't yet suffered the burning of the skin, or the sore throat, but they'll be along soon, no doubt. I'm also dreading my next session of chemo, which is next Wednesday, considering how sick I was last time.
I've finally been seen by a physio, who agreed that I am indeed "as stiff as a very stiff thing" (stop sniggering at the back), and I need a programme of physiotherapy. This was just an assessment meeting, but she did me the honour of prodding and poking me in painful places, just to confirm that I'm not malingering. Next appointment is next Tuesday, when the series of torture will begin in earnest.
Changing the subject completely, let me tell you about the little indulgence that Catherine and I have allowed oursleves. As we've had such a crap summer, we've decided to treat ourselves to a Brennan, which is a CD-player with a hard disc that stores up to 5,000 CDs. We've justified it on the basis that it's a joint birthday present. Catherine's birthday is next week, but mine is in January! It's due to be delivered in the last week of September, and I can't wait to get my hands on it. Check it out at www.brennan.co.uk.
So, back to the topic of physiotherapy:
1. Exercise - Clem Snide
2. Lean On Me - Bill Withers
3. Touch Me In The Morning - Diana Ross
4. Angel Fingers - Wizzard
5. Release The Pressure - Leftfield
6. Closer to The Bone - Kris Kristofferson
7. Tighten Up - Archie Bell & The Drells
8. Loosen Up - E.T. White
9. See Me, Feel Me - The Who
10. Hands Off My Baby - Mary Wells
Stay loose!
RP
The radiotherapy continues, and the treatment itself is still not too unpleasant, although I'm certainly starting to enjoy the side-effects.
To be positive, I've now done 10 sessions, which is a smidgen over 30%. Obviously, I'd be happier to be sitting here saying it's 30% to go, but with a fair wind, and all pulling together, we just might get through this.
So, those side effects. Most noticeable, and most annoying and embarrassing, is the saliva. Basically, everyone has two sets of saliva glands: one is responsible for "thin" saliva, and the other pumps out the thick gloopy stuff. Under normal circumstances, both sets of gob combine in the mouth, for a liquid of ideal consistency,which we swallow and expel without really noticing for most of the time.
When being treated with radiotherapy, the gland which makes the thin saliva goes on holiday, so you're stuck with footballers' spit, and lots of it. Swallowing this stuff is like drinking sick, and so produces the inevitable gagging response. I think I've managed to get a total of about 6 hours sleep in the last two nights, as I keep waking up retching on the muck in my mouth. I'm told that by the end of the course of treatment, it will have taken on the consistency of chewing gum, which obviously I'm looking forward to.
Not a lot to do except grin and bear it, I'm afraid. I'm instructed to keep my mouth as clean as possible, using the nebuliser and mouth-suction frequently, and possibly sucking ice chips from time to time, to lightn the consistency, but basically I've got to put up with it. Could be worse.
Of other symptoms, I have checked with Dr Sibtain: deafness in my right ear? "That'll be the radiotherapy"; breathlessness and fatigue? "That'll be the radiotherapy"; numbness across the whole of the right side of my face? "That'll be the radiotherapy"; a powerful erection, which drains the blood from the rest of my body and lasts for six hours? "That'll be the radiotherapy".
Actually that last one was a lie, just checking you're still awake.
I haven't yet suffered the burning of the skin, or the sore throat, but they'll be along soon, no doubt. I'm also dreading my next session of chemo, which is next Wednesday, considering how sick I was last time.
I've finally been seen by a physio, who agreed that I am indeed "as stiff as a very stiff thing" (stop sniggering at the back), and I need a programme of physiotherapy. This was just an assessment meeting, but she did me the honour of prodding and poking me in painful places, just to confirm that I'm not malingering. Next appointment is next Tuesday, when the series of torture will begin in earnest.
Changing the subject completely, let me tell you about the little indulgence that Catherine and I have allowed oursleves. As we've had such a crap summer, we've decided to treat ourselves to a Brennan, which is a CD-player with a hard disc that stores up to 5,000 CDs. We've justified it on the basis that it's a joint birthday present. Catherine's birthday is next week, but mine is in January! It's due to be delivered in the last week of September, and I can't wait to get my hands on it. Check it out at www.brennan.co.uk.
So, back to the topic of physiotherapy:
1. Exercise - Clem Snide
2. Lean On Me - Bill Withers
3. Touch Me In The Morning - Diana Ross
4. Angel Fingers - Wizzard
5. Release The Pressure - Leftfield
6. Closer to The Bone - Kris Kristofferson
7. Tighten Up - Archie Bell & The Drells
8. Loosen Up - E.T. White
9. See Me, Feel Me - The Who
10. Hands Off My Baby - Mary Wells
Stay loose!
RP
Monday 6 September 2010
Radio Radio
So was it the radiotherapy of the chemotherapy, or a bit of both? Dr Sibtain assures me it was the chemo which knocked me for six last Thursday, and threw me into a vomiting torpor from which I only emerged yesterday, almost a week later. Dr Sib says they'll up the anti-emetic medication for the next two chemotherapy sessions, which should reduce the side-effects, although it probably won't eradicate them entirely.
I ended up being admitted to Barts on Friday night, due to the dehydration, but I'm on the mend now, and haven't missed a radiotherapy session, which they take a very dim view of. So that's 6 down, 27 to go!
The radiotherapy sessions themselves are mildly uncomfortable, but certainly nothing too arduous. You lie alone and absolutely still on a cold slab in a cold room, wearing the mesh mask, while machines whir and clank and gurgle around you. They play music while you're treated, and there's a calming photo of autumn leaves to admire on the ceiling. Only last Friday - in the depths of my sickness - have I had to interrupt a session. The music generally consists of nondescript pop stuff, but on the day I was really sick, they played a never-ending loop of some oriental version of These Foolish Things, which seemed to be slowed down, like a single being played on 33rpm. I don't know whether they thought this was restful. If so, they were wrong. The treatment takes place 5 days a week, for six and a half weeks.
The radiotherapy symptoms kick in with full effect after 2-3 weeks. They include burning of the skin, drying of the mouth, and extreme tiredness. I've already got a bit of the fatigue, and my mouth has developed a horrible gloopy saliva, impossible to swallow, and nausea-inducing, but I just have to grin and bear this. At the moment it's not that bad.
Catherine has ordered me to write down at least one positive thought every day. On Monday, I managed "Everton didn't lose at the weekend" (they didn't play. Other than that, my best has been "Roll on Halloween!". Any suggestions for positive thinking - serious or jocular - most welcome.
Top ten radiotherapy songs:
1. Radio Song - REM
2. I'm So Tired - The Beatles
3. Cool Waves - Spisitualized
4. Starting To Hurt - Ryan Adams
5. Peaceful, The World Lays Me Down - Noah & The Whales
6. Shut Your Eyes - Snow Patrol
7. I Think I've Had Enough - Jayhawks
8. Tired Skin - Southside Johnny & The Asbury Jukes
9. Everyday - Buddy Holly
10. In A Lonely Place - New Order
Come on you Blues! (Everton vs Man Utd, Saturday)
RP
I ended up being admitted to Barts on Friday night, due to the dehydration, but I'm on the mend now, and haven't missed a radiotherapy session, which they take a very dim view of. So that's 6 down, 27 to go!
The radiotherapy sessions themselves are mildly uncomfortable, but certainly nothing too arduous. You lie alone and absolutely still on a cold slab in a cold room, wearing the mesh mask, while machines whir and clank and gurgle around you. They play music while you're treated, and there's a calming photo of autumn leaves to admire on the ceiling. Only last Friday - in the depths of my sickness - have I had to interrupt a session. The music generally consists of nondescript pop stuff, but on the day I was really sick, they played a never-ending loop of some oriental version of These Foolish Things, which seemed to be slowed down, like a single being played on 33rpm. I don't know whether they thought this was restful. If so, they were wrong. The treatment takes place 5 days a week, for six and a half weeks.
The radiotherapy symptoms kick in with full effect after 2-3 weeks. They include burning of the skin, drying of the mouth, and extreme tiredness. I've already got a bit of the fatigue, and my mouth has developed a horrible gloopy saliva, impossible to swallow, and nausea-inducing, but I just have to grin and bear this. At the moment it's not that bad.
Catherine has ordered me to write down at least one positive thought every day. On Monday, I managed "Everton didn't lose at the weekend" (they didn't play. Other than that, my best has been "Roll on Halloween!". Any suggestions for positive thinking - serious or jocular - most welcome.
Top ten radiotherapy songs:
1. Radio Song - REM
2. I'm So Tired - The Beatles
3. Cool Waves - Spisitualized
4. Starting To Hurt - Ryan Adams
5. Peaceful, The World Lays Me Down - Noah & The Whales
6. Shut Your Eyes - Snow Patrol
7. I Think I've Had Enough - Jayhawks
8. Tired Skin - Southside Johnny & The Asbury Jukes
9. Everyday - Buddy Holly
10. In A Lonely Place - New Order
Come on you Blues! (Everton vs Man Utd, Saturday)
RP
Sunday 5 September 2010
Blog publishing error...
Dear all
I published Rick's draft blog but it has appeared before my last entry, so for those of you who are interested you can find it under "My Drug Buddy" dated 31st Aug 2010, although it does refer to events on 1st September.
Rick is out of hospital - just an overnight stay this time - and feeling a bit more human now.
Catherine
I published Rick's draft blog but it has appeared before my last entry, so for those of you who are interested you can find it under "My Drug Buddy" dated 31st Aug 2010, although it does refer to events on 1st September.
Rick is out of hospital - just an overnight stay this time - and feeling a bit more human now.
Catherine
Thursday 2 September 2010
Phase 2
Just a quick update - Rick started Chemo and Radiotherapy yesterday, all ok up till about 3pm today when the side effects have started. He is feeling very sick and miserable which is absolutely to be expected, but fingers crossed, should be getting less over the next few days.
I know there is another, far more entertaining, blog in the pipeline but it's still in draft form so you will have to put up with basic facts and no song list - sorry!
I'll now go and minister to my patient.
Catherine x
I know there is another, far more entertaining, blog in the pipeline but it's still in draft form so you will have to put up with basic facts and no song list - sorry!
I'll now go and minister to my patient.
Catherine x
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