Have come away from hospital with what I see as a rather bizarre* proposal to attempt chemotherapy for mum. Two years I was told her general health/frailty meant she would not withstand any treatment if a cancer was found ..... The 'current thinking' following latest tests is that a stent will not improve her swallowing and the only way to achieve this is to shrink the tumour around her larynx with chemo ....However, she is clearly too frail to withstand chemotherapy so PEG feeding is suddenly back on the agenda ...... Idea is to insert PEG and then get her home (how ill does anyone have to be to stay in hospital these days?). On the one hand I'm delighted to think we might manage a return home .... delighted too that there seems to be some hope for some improvement (although I was gently warned they are not talking complete cure, of course). This was all from a 'medical doctor' and I will be meeting with the Upper GI specialists on Friday/Monday to look at pros/cons of the proposals and give consent or not.
*Bizarre because I thought PEG feeding would simply sustain weight or perhaps slightly improve it - anyone have any experience of people actually putting a serious amount of weight on?
My cynicism tells me that the hospital are just dangling a carrot in an attempt to give us hope and there is no realistic chance of the chemo going ahead .... but if it did - how would such a confused person manage with the likely side effects?
The chemo (if we go ahead) would take place in a specialist hospital (yet another change of environment and associated confusion for mum) ... once the PEG is inserted (if we go ahead) mum would be discharged from the fabulous ward she is now on and would only return to a medical ward for specialist treatment for her cancer ..... but the cancer isn't only in her larynx?
I obviously want to give mum the 'best shot' - but I felt today that her needs are being assessed only from a physical point of view ... what effects these 'procedures' may have on her dementia??? How much pain for how little gain? It's that damned if you do, damned if you don't ..... I just don't want her to go thru anything unecessarily which might actually reduce her quality of life - but how to deny any chance of improving it? ... I never was good at gambling ... Mum barely understood a word the doc was saying at the meeting and just kept looking to me and saying 'Whatever you think is best' .... Trouble is I don't know what to think ........ If I was deciding for me in the same situation, I know I would refuse any further intervention for myself - but I'm not choosing for me ....... and I'm not sure I could suggest we refuse to consent to the proposals ..... (the doc said it would be mum's consent in consultation with me - but clearly mum will just go along with whatever I say) .......
If anyone has any thoughts ... and don't hesitate to be blunt! (I was actually bracing myself for far worse news today) ..... gratefully received - will help me with the next meeting and all the questions I need to ask,
Sorry to go on so much and think out loud - head's in bits ...
Karen, x
*Bizarre because I thought PEG feeding would simply sustain weight or perhaps slightly improve it - anyone have any experience of people actually putting a serious amount of weight on?
My cynicism tells me that the hospital are just dangling a carrot in an attempt to give us hope and there is no realistic chance of the chemo going ahead .... but if it did - how would such a confused person manage with the likely side effects?
The chemo (if we go ahead) would take place in a specialist hospital (yet another change of environment and associated confusion for mum) ... once the PEG is inserted (if we go ahead) mum would be discharged from the fabulous ward she is now on and would only return to a medical ward for specialist treatment for her cancer ..... but the cancer isn't only in her larynx?
I obviously want to give mum the 'best shot' - but I felt today that her needs are being assessed only from a physical point of view ... what effects these 'procedures' may have on her dementia??? How much pain for how little gain? It's that damned if you do, damned if you don't ..... I just don't want her to go thru anything unecessarily which might actually reduce her quality of life - but how to deny any chance of improving it? ... I never was good at gambling ... Mum barely understood a word the doc was saying at the meeting and just kept looking to me and saying 'Whatever you think is best' .... Trouble is I don't know what to think ........ If I was deciding for me in the same situation, I know I would refuse any further intervention for myself - but I'm not choosing for me ....... and I'm not sure I could suggest we refuse to consent to the proposals ..... (the doc said it would be mum's consent in consultation with me - but clearly mum will just go along with whatever I say) .......
If anyone has any thoughts ... and don't hesitate to be blunt! (I was actually bracing myself for far worse news today) ..... gratefully received - will help me with the next meeting and all the questions I need to ask,
Sorry to go on so much and think out loud - head's in bits ...
Karen, x