I do understand that medical practitioners need to be careful not to be unnecessarily dramatic, I really do. I mean on walking into a doctor's surgery with a bad cough, you don't need to be told immediately "Oh my god, this could be lung cancer! It might have spread through the chest cavity already! Or even be a SECONDARY site! Cheeses! Get the CAT scan! Alert Oncologists and palliative team! Who is your next of kin??
Yep. Because that would be alarmist.
And I mean likewise, when they need to open you up to remove any tumour, and then, em don't. Well there's no point admitting that this is conclusively bad news. Better you tell the relatives "We need to wait on the biopsy", than admitting "Christ on a bike! the tumour's HUGE. You're going to need as much strength as possible for the chemo! And even then there's no hope"
And even if your consultant does find that a rare form of cancer has arisen in the lining of your blood vessesls, affecting soft tissues throughout your bones and chest cavity, the news is still tempered. Oh yes, they say it can be treated. Yep, as Nurse Linda pointed out to us later, treated, not cured..
Tumours will be treated aggressively with chemotherapy: tumours in the lung they mean. They can't do that with the ones in the bone.
Pain relief can be given. We get an intrathecal - this will cure pain. And we were told that "some people can experience some loss of mobility". Some people... not "you will loose al
l sensation in your legs, crash to floor and need to be hoisted"
Having had enough of the softly softly gradual disclosure approach, Nurse Linda and I did ask point blank as to how W will die of this cancer and had an almost beautiful death described. W will float out of life, having become more and more fatigued. You know, I really did have a picture of Millais' Ophelia! HA!
Yeah right. Last week W's consultant, who obviously hasn't been advised of the tiptoe around the bad news approach, asked him how he would cope with the loss of mobility. Understandably, this got W really scared; and we were scared, and at this point I tried to make it as clear as possible to the hospice that, stuff the gradual-disclosure-on-a-need-to-know basis, we really need to know the worst now.
So a meeting was called with the palliative care team, and a list of questions sent in advance, including "what does loss of mobility mean?", and "what did the scan show?"
Nurse Linda and I left a meeting with the palliative care team shaken, but reassured.
In an old person they said, they would guess that W had a couple of weeks, but with young, otherwise strong people the route of the disease is less certain. W has had major rallies already. And you know there is no clot on his lung. Oh yes, the scan showed some spread of the disease, but entirely as to be expected. For the tumour on his lung, Midazalan will ease the breathing, and he will be in no fear, pain or panic. No he won't need oxygen.
Um....Yes, OK, he will become immobile, and yes we are close to that point, but again, the fatigue will mean that he doesn't resent or even notice this.
Hurrah!
Yeah, well it looks like every carer needs an informant. So big thanks to Steve who phoned on Sunday. W has been having bad nights (nobody at the meeting told us about these! He can't remember when he comes round), oxygen has been administered, Steve is worried how we will cope with this at home. Especially as W is now functioning on what's left of one lung.
One damaged lung?? Nobody told us about one damaged lung. And the pooling....
And this Midazalan? it takes awhile to kick in. So yes he is having very bad nights indeed.
And I'm pretty sure we have not been fully informed.
Yep. Because that would be alarmist.
And I mean likewise, when they need to open you up to remove any tumour, and then, em don't. Well there's no point admitting that this is conclusively bad news. Better you tell the relatives "We need to wait on the biopsy", than admitting "Christ on a bike! the tumour's HUGE. You're going to need as much strength as possible for the chemo! And even then there's no hope"
And even if your consultant does find that a rare form of cancer has arisen in the lining of your blood vessesls, affecting soft tissues throughout your bones and chest cavity, the news is still tempered. Oh yes, they say it can be treated. Yep, as Nurse Linda pointed out to us later, treated, not cured..
Tumours will be treated aggressively with chemotherapy: tumours in the lung they mean. They can't do that with the ones in the bone.
Pain relief can be given. We get an intrathecal - this will cure pain. And we were told that "some people can experience some loss of mobility". Some people... not "you will loose al
l sensation in your legs, crash to floor and need to be hoisted"Having had enough of the softly softly gradual disclosure approach, Nurse Linda and I did ask point blank as to how W will die of this cancer and had an almost beautiful death described. W will float out of life, having become more and more fatigued. You know, I really did have a picture of Millais' Ophelia! HA!
Yeah right. Last week W's consultant, who obviously hasn't been advised of the tiptoe around the bad news approach, asked him how he would cope with the loss of mobility. Understandably, this got W really scared; and we were scared, and at this point I tried to make it as clear as possible to the hospice that, stuff the gradual-disclosure-on-a-need-to-know basis, we really need to know the worst now.
So a meeting was called with the palliative care team, and a list of questions sent in advance, including "what does loss of mobility mean?", and "what did the scan show?"
Nurse Linda and I left a meeting with the palliative care team shaken, but reassured.
In an old person they said, they would guess that W had a couple of weeks, but with young, otherwise strong people the route of the disease is less certain. W has had major rallies already. And you know there is no clot on his lung. Oh yes, the scan showed some spread of the disease, but entirely as to be expected. For the tumour on his lung, Midazalan will ease the breathing, and he will be in no fear, pain or panic. No he won't need oxygen.
Um....Yes, OK, he will become immobile, and yes we are close to that point, but again, the fatigue will mean that he doesn't resent or even notice this.
Hurrah!
Yeah, well it looks like every carer needs an informant. So big thanks to Steve who phoned on Sunday. W has been having bad nights (nobody at the meeting told us about these! He can't remember when he comes round), oxygen has been administered, Steve is worried how we will cope with this at home. Especially as W is now functioning on what's left of one lung.
One damaged lung?? Nobody told us about one damaged lung. And the pooling....
And this Midazalan? it takes awhile to kick in. So yes he is having very bad nights indeed.
And I'm pretty sure we have not been fully informed.
11 October 2009 at 16:48
There comes a point with any treatment where the results are, at best, a guess. There are too many variables to be certain so the professionals, with one eye on the potential for litigation and/or for nasty headlines, tend to err on the cautious. It's understandable, but it's no bloody consolation to the people involved.
Hang in there...