Filtered (not mum): St Georges ENT clinic
Friday, April 16th, 2010 12:10 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lizziecFirst things first, Phil's first driving lesson sounds like it went ok. Most of what he describes pretty much sums up my first lesson, so I'm not overly worried. He's on mum's insurance now, so I'll be taking him out (in her car) for some practicing Real Soon Now.
Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, pleasebare bear stay with me.
Almost flew over to Tooting this morning as the traffic was extremely light. The bad news was that this meant that lots of waiting around at Uncle and Aunt's house before we could leave, during which time we got more and more worked up in our own quiet ways. Grateful forever to my Uncle and Aunt who were both stars and rocks today. The St Georges site is huge and crowded, meaning parking is at a minimum. Uncle dropped us and picked us up, Aunt met us at the drop off point with a wheelchair and stayed with us through everything, which was utterly amazing of her, and a great comfort for mum and me.
Though mum's mobility wasn't too bad today, the wheelchair turned out to have been a good idea as the clinic was crowded and there was nowhere to sit, which mum couldn't have managed.
We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us what they know (not enough yet, sadly) and what they don't and answering our questions and concerns. I spent a lot of the time writing notes on what he was saying for relaying on later. And so we could actually remember what he said.
Mr Williamson talked about what the CT, MRI and biopsy had shown, though he didn't actually divide it into "this is what CT showed, this is what MRI showed and this is what biopsy showed", which was both useful and not. Useful in that the information had a cohesiveness and flow, and not in that in places I'm not clear on how they came to the conclusions they did (if that makes sense).
He confirmed that the tumour is a malignant growth and said it was "a significant and extensive tumour which could threaten [mum's] eyesight" and that they needed to do further testing
on the tumour to narrow down what type, such as extra staining, which was happening as we
spoke. He told us his registrar would chase down the results either this afternoon or in the morning to make sure that they had them as soon as possible, which will definitely be by next Thursday, which is when the St Georges team have a big meeting to discuss cases and treatment, and when the next clinic is. Until they know for certain what kind of tumour it is, no
treatment can really be discussed, as the treatment differs depending on the tumour, which was something he stressed several times. In fact, a lot of our lines of conversation petered out on "until we know what it is for certain, we can't say what will happen..."
They now believe (are virtually certain) that the tumour that they have found, on and behind mum's cheekbone, is actually a primary tumour. Apparently this is very rare, and that's why they'd been thinking it was a secondary tumour. I'm not entirely clear on why they're now leaning towards it being a primary, unless it's that they just couldn't find anything else that might be a primary tumour anywhere else.
Mr Williamson discussed the main lines of thought as to what kind of cancer it was, which I was really grateful for. The list (in the order he listed them) is
* a Rhabdomyosarcoma (which is apparently a type of cancer that grows on muscle) [I'm glad I wrote that bit down, because I spelled it completely wrong in my notes and tracked it down based on the wrong spelling and the description I'd scribbled next to it]
* a Lymphoma (although the doctor said that they're pretty sure it's not a lymphoma now, though I'm not clear on why)
* a Melanoma. If it is a Melanoma instead of growing on mum's skin outside it's growing inside mum's nasal cavity.
The biggest blow of the consultation was that the Consultant, who is a surgeon (and said himself that he usually looked for a way to fix things that involved an operation - playing to the stereotype :)), said that the Tumour, whatever it is, is inoperable because of its location and size. It's wrapped itself around mum's Carotid Artery. Any operation to remove it would cause mum to have a massive stroke, and so basically he's not going to touch that one with a barge pole. And I can't say I'd blame him. If we had a choice I'd probably push mum away from this course of action. The way Mr Williamson laid it out he suggested the stroke would be so massive it would either kill her or leave her a vegetable. So surgery is out.
He did stress that he thought that Chemotherapy and possibly Radiotherapy were options, though until they know what the tumour is they don't know in what combinations or whether or not chemo/radio would be with the aim/possibility of a cure, or whether it would be... I dunno - palliative? Relieving symptoms and extending life? Making the best of a bad job?
Treatment, whatever it is, will almost certainly being at St Georges or The Royal Marsden, though which depends on the type of the tumour and where the expert team on it happens to be.
Each hospital has its downsides.
St Georges would be preferable in that it's very close to my aunt and uncle's, and so support and lifts and stuff.
The Royal Marsden is a world leader, but it's in Chelsea, in the congestion charge zone and with no parking, meaning if mum goes on a daily basis or anything we're looking at getting there and back on trains and busses/tubes or taxis. And we all know how well public transport providers (and other people using it...) like it when you throw up or anything. So getting there and back could well be a nightmare.
At the same time, The Royal Marsden has abranch second site about three miles away which would be much easier for me (or other family, or friends) to get mum to, even if we can't easily park there. However, depending on what the tumour is and where the experts are based, it could be either site of the Marsden.
I really want mum to get the best treatment, but the mere thought of trying to get to Chelsea and back on public transport on a daily (or even weekly) basis with mum as she is now fills me with dread, and gives me a headache. Really though, I'm worrying prematurely.
So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.
Long brain dump so far, sorry. There's still some to go.
The consultant handed us over to a Macmillan nurse, and then to a dietician (as I'd wibbled a little at the consultant about the problems getting mum proper nutrition) who gave us lots of good advice about managing the cancer and the type 2 diabetes. Upshot of it is that mum's supposed to eat little and often, keeping sugar to a minimum but maximising calories by having lots of full fat milk, yoghurt, smoothies, eggs and chicken/fish, and to drink lots - at least 2l of fluids a day, with the aim of avoiding more UTIs. The dietician said that we should be aiming to avoid any weight loss at the moment, so Phil and I have been out shopping and stocked up the fridge with all sorts of things we hope will tempt mum's appetite, and make eating every two hours a fairly varied experience.
Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.
Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.
Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.
ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.
ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.
ETA3: Have a cold. Most unimpressed.
ETA: 12/07/11 No longer filtered
Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, please
Almost flew over to Tooting this morning as the traffic was extremely light. The bad news was that this meant that lots of waiting around at Uncle and Aunt's house before we could leave, during which time we got more and more worked up in our own quiet ways. Grateful forever to my Uncle and Aunt who were both stars and rocks today. The St Georges site is huge and crowded, meaning parking is at a minimum. Uncle dropped us and picked us up, Aunt met us at the drop off point with a wheelchair and stayed with us through everything, which was utterly amazing of her, and a great comfort for mum and me.
Though mum's mobility wasn't too bad today, the wheelchair turned out to have been a good idea as the clinic was crowded and there was nowhere to sit, which mum couldn't have managed.
We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us what they know (not enough yet, sadly) and what they don't and answering our questions and concerns. I spent a lot of the time writing notes on what he was saying for relaying on later. And so we could actually remember what he said.
Mr Williamson talked about what the CT, MRI and biopsy had shown, though he didn't actually divide it into "this is what CT showed, this is what MRI showed and this is what biopsy showed", which was both useful and not. Useful in that the information had a cohesiveness and flow, and not in that in places I'm not clear on how they came to the conclusions they did (if that makes sense).
He confirmed that the tumour is a malignant growth and said it was "a significant and extensive tumour which could threaten [mum's] eyesight" and that they needed to do further testing
on the tumour to narrow down what type, such as extra staining, which was happening as we
spoke. He told us his registrar would chase down the results either this afternoon or in the morning to make sure that they had them as soon as possible, which will definitely be by next Thursday, which is when the St Georges team have a big meeting to discuss cases and treatment, and when the next clinic is. Until they know for certain what kind of tumour it is, no
treatment can really be discussed, as the treatment differs depending on the tumour, which was something he stressed several times. In fact, a lot of our lines of conversation petered out on "until we know what it is for certain, we can't say what will happen..."
They now believe (are virtually certain) that the tumour that they have found, on and behind mum's cheekbone, is actually a primary tumour. Apparently this is very rare, and that's why they'd been thinking it was a secondary tumour. I'm not entirely clear on why they're now leaning towards it being a primary, unless it's that they just couldn't find anything else that might be a primary tumour anywhere else.
Mr Williamson discussed the main lines of thought as to what kind of cancer it was, which I was really grateful for. The list (in the order he listed them) is
* a Rhabdomyosarcoma (which is apparently a type of cancer that grows on muscle) [I'm glad I wrote that bit down, because I spelled it completely wrong in my notes and tracked it down based on the wrong spelling and the description I'd scribbled next to it]
* a Lymphoma (although the doctor said that they're pretty sure it's not a lymphoma now, though I'm not clear on why)
* a Melanoma. If it is a Melanoma instead of growing on mum's skin outside it's growing inside mum's nasal cavity.
The biggest blow of the consultation was that the Consultant, who is a surgeon (and said himself that he usually looked for a way to fix things that involved an operation - playing to the stereotype :)), said that the Tumour, whatever it is, is inoperable because of its location and size. It's wrapped itself around mum's Carotid Artery. Any operation to remove it would cause mum to have a massive stroke, and so basically he's not going to touch that one with a barge pole. And I can't say I'd blame him. If we had a choice I'd probably push mum away from this course of action. The way Mr Williamson laid it out he suggested the stroke would be so massive it would either kill her or leave her a vegetable. So surgery is out.
He did stress that he thought that Chemotherapy and possibly Radiotherapy were options, though until they know what the tumour is they don't know in what combinations or whether or not chemo/radio would be with the aim/possibility of a cure, or whether it would be... I dunno - palliative? Relieving symptoms and extending life? Making the best of a bad job?
Treatment, whatever it is, will almost certainly being at St Georges or The Royal Marsden, though which depends on the type of the tumour and where the expert team on it happens to be.
Each hospital has its downsides.
St Georges would be preferable in that it's very close to my aunt and uncle's, and so support and lifts and stuff.
The Royal Marsden is a world leader, but it's in Chelsea, in the congestion charge zone and with no parking, meaning if mum goes on a daily basis or anything we're looking at getting there and back on trains and busses/tubes or taxis. And we all know how well public transport providers (and other people using it...) like it when you throw up or anything. So getting there and back could well be a nightmare.
At the same time, The Royal Marsden has a
I really want mum to get the best treatment, but the mere thought of trying to get to Chelsea and back on public transport on a daily (or even weekly) basis with mum as she is now fills me with dread, and gives me a headache. Really though, I'm worrying prematurely.
So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.
Long brain dump so far, sorry. There's still some to go.
The consultant handed us over to a Macmillan nurse, and then to a dietician (as I'd wibbled a little at the consultant about the problems getting mum proper nutrition) who gave us lots of good advice about managing the cancer and the type 2 diabetes. Upshot of it is that mum's supposed to eat little and often, keeping sugar to a minimum but maximising calories by having lots of full fat milk, yoghurt, smoothies, eggs and chicken/fish, and to drink lots - at least 2l of fluids a day, with the aim of avoiding more UTIs. The dietician said that we should be aiming to avoid any weight loss at the moment, so Phil and I have been out shopping and stocked up the fridge with all sorts of things we hope will tempt mum's appetite, and make eating every two hours a fairly varied experience.
Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.
Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.
Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.
ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.
ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.
ETA3: Have a cold. Most unimpressed.
ETA: 12/07/11 No longer filtered
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: Fri, Apr. 16th, 2010 06:21 am (UTC)no subject
Date: Fri, Apr. 16th, 2010 06:50 am (UTC)Most people I know who've had chemotherapy or radiotherapy haven't had to go on a daily basis, because it knocks you out so they generally wait a while between sessions, but obviously every case is different. Hopefully there'll be ways of dealing with the transport issue, though: if it's difficult to get to and there's no parking then everyone must have problems getting there and they must have ways round it.
*Hugs*
no subject
Date: Fri, Apr. 16th, 2010 09:50 am (UTC)I hope you can get your rest and relaxation *hugs*