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
Monday 31 October 2011
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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