I've known all sorts of frustration: dashes to my personal aims; obstacles to professional aspirations, and of course, frustration of a sexual nature. I can, however, say with some confidence that I have never experienced the frustration which accompanies the return of cancer.
Just when it was all going so well; I can't pretend this has been easy to take.
I know that Catherine has been keeping my public informed, but the simple fact is, it's hit me in the lung, liver and spleen. Yes, dear friends, I'm afraid it's back to square one, or even worse. A couple of months ago, I was feeling great, getting a buzz out of life, and felt on a general upward trajectory. Today, I'm a 7-stone weakling, increasingly dependent on others, with rapidly reducing self-respect and dignity.
Family and friends have gathered around magnificently, and we have a treatment plan, so my feeble fingers are crossed in hope - expectation - of a recovery, of sorts.
So, how do I feel through all this - mentally, rather than physically? A well-meaning Palliative Care nurse asked in a very solemn manner, doe-eyes turned to max, "are you still feeling angry?". My grouchy response was I had never felt angry about it, and it is only damn-fool questions like that which anger me.
No, my overwhelming emotion is frustration, with a side-helping of sadness. Still, I'll just have to get to grips with it; move on, and deal with it as best I can.
Here are 3 songs about anger, frustration and sadness.
1 I'm not angry - Elvis Costello
2 Tears of Rage - The Band
3 Frustrated, Bagshot - The Members
RP
(Rick hadn't finished going through the song list but I thought I would get this published anyway - any more ideas for songs, please feel free to suggest any - Catherine)
Thursday, 24 November 2011
Monday, 21 November 2011
Chemo crisis!
Well, so much for us thinking that chemotherapy wouldn't be so bad this time!
As I said in the last post, Rick had chemo on Wed and came home with his bottle attached; he was fine Thursday morning and most of the afternoon but towards the evening he started feeling under the weather and ached all over. Friday morning was worse, hard to breathe, vomiting, and pain everywhere - chemo helpline suggested either coming in to Bart's, contacting our GP for more anti-sickness medication or going to our local A & E. By the time I'd had the phone call with them, Rick was worse and so, for my first ever time I dialled 999 and got an ambulance! They were really prompt and within about 10 minutes he was being treated in the ambulance with oxygen and all his vital signs monitored, including an ECG. Anyway, we joined the Friday morning rush hour and went off to hospital. I would just like to point out that I was not really ready to face people at this stage bearing in mind that although I had been up since 6am, I had just fallen out of bed into dog walking clothes, walked Molly round the park (it is dark and nobody sees me), I'd not washed, showered or done anything with my hair or face - and here we were going to hospital where there would be lots of people who had washed and dressed appropriately - I just hoped in the warmth of the hospital I wouldn't smell too bad! But I digress...
Rick was assessed quite quickly in A & E - blood tests, urine samples, chest x-ray - and then sent to the Emergency Medicine Centre, which is a short stay ward off A & E before the patient is allocated another ward in the main hospital. He had a couple of units of blood, lots of IV antibiotics, and saline and potassium (I think) because he was very dehydrated. So now, as well as his bottle of chemo which was still going in, Rick has a line in the other arm as well as the oxygen tubing which is stuck up his nose - what with the emergency bell call cable and the control for raising and lowering the bed it is easy to get tied up in knots!
To cut a long story short, Rick stayed in the EMC all day Friday and was transferred to a ward on Saturday afternoon - and what a difference that was. He went from a very quiet 4 bedded ward with only one other person to a huge 19 bedded ward which seemed to be full of patients looking like geriatric convicts dressed in prison issue orange or green pj's, and the noise...there were call bell alarms going off, machines bleeping, people talking very loudly into mobile phones which were also on loudspeaker (to be fair they probably were hard of hearing). Luckily Emma and Lucy promptly bought some ear plugs for Rick which made his first night slightly more bearable.
He has continued to improve, apart from an episode yesterday morning when his O2 saturation went down to 89% (not a good thing), he's had more IV antibiotics and his markers are down (medical speak for it is a good thing), and should be able to come home today. He has yet to have the chemo bottle disconnected. Although the chemo finished on Saturday there have been no suitably qualified staff to safely remove and dispose of it. They have assured us that someone will be around who can do it today.
And now I think I have brought you all up to date with what has been going on Chez Parsons this weekend - I do hope your weekends have been better!
Thanks for the soup suggestions, keep them coming
Love and kisses
Catherine x
As I said in the last post, Rick had chemo on Wed and came home with his bottle attached; he was fine Thursday morning and most of the afternoon but towards the evening he started feeling under the weather and ached all over. Friday morning was worse, hard to breathe, vomiting, and pain everywhere - chemo helpline suggested either coming in to Bart's, contacting our GP for more anti-sickness medication or going to our local A & E. By the time I'd had the phone call with them, Rick was worse and so, for my first ever time I dialled 999 and got an ambulance! They were really prompt and within about 10 minutes he was being treated in the ambulance with oxygen and all his vital signs monitored, including an ECG. Anyway, we joined the Friday morning rush hour and went off to hospital. I would just like to point out that I was not really ready to face people at this stage bearing in mind that although I had been up since 6am, I had just fallen out of bed into dog walking clothes, walked Molly round the park (it is dark and nobody sees me), I'd not washed, showered or done anything with my hair or face - and here we were going to hospital where there would be lots of people who had washed and dressed appropriately - I just hoped in the warmth of the hospital I wouldn't smell too bad! But I digress...
Rick was assessed quite quickly in A & E - blood tests, urine samples, chest x-ray - and then sent to the Emergency Medicine Centre, which is a short stay ward off A & E before the patient is allocated another ward in the main hospital. He had a couple of units of blood, lots of IV antibiotics, and saline and potassium (I think) because he was very dehydrated. So now, as well as his bottle of chemo which was still going in, Rick has a line in the other arm as well as the oxygen tubing which is stuck up his nose - what with the emergency bell call cable and the control for raising and lowering the bed it is easy to get tied up in knots!
To cut a long story short, Rick stayed in the EMC all day Friday and was transferred to a ward on Saturday afternoon - and what a difference that was. He went from a very quiet 4 bedded ward with only one other person to a huge 19 bedded ward which seemed to be full of patients looking like geriatric convicts dressed in prison issue orange or green pj's, and the noise...there were call bell alarms going off, machines bleeping, people talking very loudly into mobile phones which were also on loudspeaker (to be fair they probably were hard of hearing). Luckily Emma and Lucy promptly bought some ear plugs for Rick which made his first night slightly more bearable.
He has continued to improve, apart from an episode yesterday morning when his O2 saturation went down to 89% (not a good thing), he's had more IV antibiotics and his markers are down (medical speak for it is a good thing), and should be able to come home today. He has yet to have the chemo bottle disconnected. Although the chemo finished on Saturday there have been no suitably qualified staff to safely remove and dispose of it. They have assured us that someone will be around who can do it today.
And now I think I have brought you all up to date with what has been going on Chez Parsons this weekend - I do hope your weekends have been better!
Thanks for the soup suggestions, keep them coming
Love and kisses
Catherine x
Wednesday, 16 November 2011
Chemo update
Rick had his PICC line inserted yesterday and started chemotherapy today - it was scheduled for next week but they managed to bring it forward. He's come home with a little bottle attached to the line which will drip-feed chemo into his vein over the next 3 days and the district nurse will take it off on Saturday. This will mean dressing will be a major problem and showering impossible - roll on Saturday!
Doctors have assured us that he shouldn't feel as sick with the chemo this time, I do hope they are right.
Keep sending positive thoughts our way,
Catherine x
Doctors have assured us that he shouldn't feel as sick with the chemo this time, I do hope they are right.
Keep sending positive thoughts our way,
Catherine x
Saturday, 12 November 2011
And now for some news
Sorry for the delay in posting any blogs. We have decided that I will do the factual updates for you and Rick will post the more entertaining news when he feels up to it.
Well now, the bronchoscopy results came back; the samples they took on the second time confirmed that the cancer in his lung is malignant and has definitely come from the head and neck cancer he had last year and not some new primary lung cancer; the bone scan was clear though he may have arthritis in his hips. He had a kidney function test on Thursday to check that the kidneys can cope with any chemo they have to offer, and the good news is that they can. Our next appointment is with Dr Sibtain on 16th Nov to get things in motion for starting chemo. They have to insert a PICC line in his arm first(it is a long canula which will enable the chemo to be administered into the bigger veins in his neck)and then they can start. It should be soon but we'll know more on Wednesday.
We are still maintaining our positive, glass half-full outlook, Rick is quite tired without much energy at the moment but hopefully after chemo he will be feeling a bit better and we'll be able to get out and perhaps see people.
I think that is all the news for the moment, I will post more when there is more to tell, thank you for being patient.
Catherine x
Oh, one last thing, if anyone has any recipes for high-calorie, smooth, nutritious soups can you email me - parsonscatherine@sky.com - I'm close to exhausting my repertoire!
Well now, the bronchoscopy results came back; the samples they took on the second time confirmed that the cancer in his lung is malignant and has definitely come from the head and neck cancer he had last year and not some new primary lung cancer; the bone scan was clear though he may have arthritis in his hips. He had a kidney function test on Thursday to check that the kidneys can cope with any chemo they have to offer, and the good news is that they can. Our next appointment is with Dr Sibtain on 16th Nov to get things in motion for starting chemo. They have to insert a PICC line in his arm first(it is a long canula which will enable the chemo to be administered into the bigger veins in his neck)and then they can start. It should be soon but we'll know more on Wednesday.
We are still maintaining our positive, glass half-full outlook, Rick is quite tired without much energy at the moment but hopefully after chemo he will be feeling a bit better and we'll be able to get out and perhaps see people.
I think that is all the news for the moment, I will post more when there is more to tell, thank you for being patient.
Catherine x
Oh, one last thing, if anyone has any recipes for high-calorie, smooth, nutritious soups can you email me - parsonscatherine@sky.com - I'm close to exhausting my repertoire!
Monday, 31 October 2011
And still we're waiting...
Just a quick update to let you know that we are still in the same position as we have been for the last month ie knowing there is something wrong, but not exactly what and where it has come from, and with no plans as yet to do anything about it. Apparently, the samples from the bronchoscopy are good but are still being analysed, and the bone scan results are unknown. We are seeing Dr Sibtain at Barts tomorrow and are hoping he can shed some light on the situation. We've been told that Rick is being discussed at all the meetings of the top surgeons and consultants of various disciplines, and we have been referred to the MacMillan nurses, District nurses and now Occupational Health - which is very nice and reassuring but what would be even better is to get some treatment!
Anyway, that's enough of my rant. I just thought I would post this to keep you all in the picture, we may know something more concrete later on this week (but don't hold your breath!)
And no songs titles either - sorry.
Catherine
Anyway, that's enough of my rant. I just thought I would post this to keep you all in the picture, we may know something more concrete later on this week (but don't hold your breath!)
And no songs titles either - sorry.
Catherine
Monday, 24 October 2011
Return To My Nightmare (part 2)
Sorry for the abrupt ending to my previous post. I get a bit tired, so it takes a bit of time to complete a blog. I was happy to take a few days, but Catherine was keen to get some information out for our expectant public, so she took an executive decision to publish and be damned, even though it was incomplete.
Anyway, where were we? Oh yeah, following several months of constant improvement, I was told, unequivocally, no argument about it, that I have lung cancer, with possibly a little bit lapping about in the liver and the spleen. So the minor operation to release the stiff muscle constraining the movement in my neck and shoulders was cancelled, but I was taken in as an in-patient nevertheless, primarily to drain the fluid from my pleura, but also to undertake various tests, to ascertain precisely what is ailing me.
The pleural drain released about 600ml of gunky-looking liquid in about 10 minutes, after which it slowed down to a trickle: eventually just over a litre was taken out of me over a couple of days. I had hoped that this would make me feel a bit more comfortable, but no such luck, I'm afraid. Inevitably, the only real release came with the god of morphine, which brought with it its own down-sides: fatigue, and the most extreme episode of constipation which I have ever suffered - more of which later.
I was in hospital for about a week, and have subsequently made a number of further visits, for a bronchoscopy, lung function test, and various other checks. The weird thing is that the more examinations I go through, the less clear is the diagnosis. Apparently, the bronchoscopy samples did not show any cancer cells although the CT scan on the lung did show up something which shouldn't be there; the pleural fluid was negative for cancer;and the lung function test was satisfactory, although it didn't feel it. This leaves us in a position where it seems clear that I'm pretty poorly, with a strong suspicion that Mr Cancer has paid a return visit, but where and how is anything but clear.
This is important, partly because nobody in the great medical fraternity at Barts & The London is able to take ownership for my treatment, until they know exactly what's wrong: we originally thought I was going to be handed over to the chest and lung specialists, but as it has still not been confirmed that the disease is in my lung, this isn't appropriate yet. Also, the treatment for a new cancer would be very different from that for a secondary cancer from the original illness.
In the meantime, I seem to be the subject of much discussion and scratching of heads, but treatment can't start until we have more clarity about what's wrong with me. I feel lousy, with absolutely no energy at all. I am of course off work again. The medical certificate from my GP puts it down to "metastatic cancer", which I believe indicates the spread of a primary cancer to another part or parts of the body. Watch this space for prognosis / diagnosis in the very near future, I hope.
Inevitably, a cocktail of drugs keeps pain under a semblance of control, but the medication - and particularly morphine - has side-effects. Yes, I sleep an awful lot, but I have also discovered the true horror of constipation. I'll spare you the graphic details, but it has been extremely unpleasant, and I am immensely grateful for the intervention of the District Nurse, Dan, who brought me sweet relief.
So, here are ten songs about constipation.
1. Constipation Blues - Screamin' Jay Hawkins
2. Trapped - Bruce Springsteen
3. I Can't Get Started - Bunny Berrigan
4. We Can Work It Out - The Beatles
5. Keep On Pushin' - The Impressions
6. Agony - Eels
7. Ain't It Hard - Sharon Jones & The Dap Kings
8. All Cleaned Out - Elliott Smith
9. Cloud of Stink - Biffy Clyro
10. Explosion - Eli Paperboy Reed & The Trueloves.
RP
PS - Rick is having another bronchoscopy on Tuesday, they'll go a bit further down to see if they can find anything conclusive; followed by a bone scan on Wednesday. Hopefully at the Lung team meeting on Friday they will have got results and formed a plan - keep your fingers crossed.
Catherine
Anyway, where were we? Oh yeah, following several months of constant improvement, I was told, unequivocally, no argument about it, that I have lung cancer, with possibly a little bit lapping about in the liver and the spleen. So the minor operation to release the stiff muscle constraining the movement in my neck and shoulders was cancelled, but I was taken in as an in-patient nevertheless, primarily to drain the fluid from my pleura, but also to undertake various tests, to ascertain precisely what is ailing me.
The pleural drain released about 600ml of gunky-looking liquid in about 10 minutes, after which it slowed down to a trickle: eventually just over a litre was taken out of me over a couple of days. I had hoped that this would make me feel a bit more comfortable, but no such luck, I'm afraid. Inevitably, the only real release came with the god of morphine, which brought with it its own down-sides: fatigue, and the most extreme episode of constipation which I have ever suffered - more of which later.
I was in hospital for about a week, and have subsequently made a number of further visits, for a bronchoscopy, lung function test, and various other checks. The weird thing is that the more examinations I go through, the less clear is the diagnosis. Apparently, the bronchoscopy samples did not show any cancer cells although the CT scan on the lung did show up something which shouldn't be there; the pleural fluid was negative for cancer;and the lung function test was satisfactory, although it didn't feel it. This leaves us in a position where it seems clear that I'm pretty poorly, with a strong suspicion that Mr Cancer has paid a return visit, but where and how is anything but clear.
This is important, partly because nobody in the great medical fraternity at Barts & The London is able to take ownership for my treatment, until they know exactly what's wrong: we originally thought I was going to be handed over to the chest and lung specialists, but as it has still not been confirmed that the disease is in my lung, this isn't appropriate yet. Also, the treatment for a new cancer would be very different from that for a secondary cancer from the original illness.
In the meantime, I seem to be the subject of much discussion and scratching of heads, but treatment can't start until we have more clarity about what's wrong with me. I feel lousy, with absolutely no energy at all. I am of course off work again. The medical certificate from my GP puts it down to "metastatic cancer", which I believe indicates the spread of a primary cancer to another part or parts of the body. Watch this space for prognosis / diagnosis in the very near future, I hope.
Inevitably, a cocktail of drugs keeps pain under a semblance of control, but the medication - and particularly morphine - has side-effects. Yes, I sleep an awful lot, but I have also discovered the true horror of constipation. I'll spare you the graphic details, but it has been extremely unpleasant, and I am immensely grateful for the intervention of the District Nurse, Dan, who brought me sweet relief.
So, here are ten songs about constipation.
1. Constipation Blues - Screamin' Jay Hawkins
2. Trapped - Bruce Springsteen
3. I Can't Get Started - Bunny Berrigan
4. We Can Work It Out - The Beatles
5. Keep On Pushin' - The Impressions
6. Agony - Eels
7. Ain't It Hard - Sharon Jones & The Dap Kings
8. All Cleaned Out - Elliott Smith
9. Cloud of Stink - Biffy Clyro
10. Explosion - Eli Paperboy Reed & The Trueloves.
RP
PS - Rick is having another bronchoscopy on Tuesday, they'll go a bit further down to see if they can find anything conclusive; followed by a bone scan on Wednesday. Hopefully at the Lung team meeting on Friday they will have got results and formed a plan - keep your fingers crossed.
Catherine
Thursday, 20 October 2011
Just When Things Were Going So Well ...
Greetings, Friends, Family and Loved Ones.
Fancy meeting here after all this time! Who'd 'a' thought it, ay? Apart from the odd minor setback, the general trajectory had been one of constant improvement: back at work, eating, drinking, playing, etc., etc. Had a two great holidays: a fabulous cruise down the Danube, followed by a lovely family break in Suffolk.
God, I was pleased with my recovery; God, I was a smug git. I suppose I should have known that life just doesn't run that smoothly. I'm not saying everything was perfect, but all things considered, it felt life was getting back to something approaching normality. Enter, stage left, the malign spirit who took control of my life about 18 months ago.
I had noticed a bit of fatigue, but it was all brought to a head around the time I was due to go into hospital for a relatively minor op, to sort out the bulky mess that is my neck, and give me more mobility in my shoulders. Around the same time, I noticed a lump in my abdomen, and was sent for an ultrasound scan at Whipps Cross hospital.
This scan revealed that there is indeed a lump, that it is a hard object, and that it shouldn't be there; but more than that it could not tell - at least about the lump. Rather more worryingly, the scan also identified that I had developed a pleural effusion: i.e., a quantity of fluid on the area around my right lung.
So, I turned up as planned for the operation, having been given prior warning that this fluid may scupper the whole proceeding, which indeed turned out to be the case: I was not considered well enough to undergo general anaesthetic, and so the op was called off. However, as they had me in hospital, the medicos decided to carry out some tests, to find out what was going on.
In spite of all these warning signs, Catherine and I were still pretty laid-back about things, assuming that whatever was going on was relatively minor, and we'd take it in our stride. Imagine our surprise, dear friends, when we were informed that in fact the CT-scan had shown a new cancer in my lung, which had also spread to my liver and spleen. (You may want to read that sentence again: I still find it barely believable, over 2-weeks later.)
To be continued ...
Fancy meeting here after all this time! Who'd 'a' thought it, ay? Apart from the odd minor setback, the general trajectory had been one of constant improvement: back at work, eating, drinking, playing, etc., etc. Had a two great holidays: a fabulous cruise down the Danube, followed by a lovely family break in Suffolk.
God, I was pleased with my recovery; God, I was a smug git. I suppose I should have known that life just doesn't run that smoothly. I'm not saying everything was perfect, but all things considered, it felt life was getting back to something approaching normality. Enter, stage left, the malign spirit who took control of my life about 18 months ago.
I had noticed a bit of fatigue, but it was all brought to a head around the time I was due to go into hospital for a relatively minor op, to sort out the bulky mess that is my neck, and give me more mobility in my shoulders. Around the same time, I noticed a lump in my abdomen, and was sent for an ultrasound scan at Whipps Cross hospital.
This scan revealed that there is indeed a lump, that it is a hard object, and that it shouldn't be there; but more than that it could not tell - at least about the lump. Rather more worryingly, the scan also identified that I had developed a pleural effusion: i.e., a quantity of fluid on the area around my right lung.
So, I turned up as planned for the operation, having been given prior warning that this fluid may scupper the whole proceeding, which indeed turned out to be the case: I was not considered well enough to undergo general anaesthetic, and so the op was called off. However, as they had me in hospital, the medicos decided to carry out some tests, to find out what was going on.
In spite of all these warning signs, Catherine and I were still pretty laid-back about things, assuming that whatever was going on was relatively minor, and we'd take it in our stride. Imagine our surprise, dear friends, when we were informed that in fact the CT-scan had shown a new cancer in my lung, which had also spread to my liver and spleen. (You may want to read that sentence again: I still find it barely believable, over 2-weeks later.)
To be continued ...
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