Filtered (not mum): The next steps (biopsy)
Sunday, April 11th, 2010 09:48 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lizziecGot to Mayday for the hastily arranged ENT appointment about half an hour early and were seen immediately by the doctor. I can't say I was overly impressed with his bedside manner, though it improved some way into the appointment where we reached a mutual understanding. A little more on that further in.
To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.
He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.
He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.
Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.
The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.
All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.
Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.
ETA: 12/07/11 No longer filtered
To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.
He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.
He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.
Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.
The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.
All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.
Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.
ETA: 12/07/11 No longer filtered
Tags:
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: Sun, Apr. 11th, 2010 09:16 pm (UTC)'Be as prepared as you can' is the best motto you can have. Having a bag packed in the boot is a very good idea, as is to make sure you always have a book in your bag so that you have something to do if/when you get hours of waiting. (Change for vending machines is a good idea, too.)
I send you lots of hugs, best wishes and positive thoughts.
no subject
Date: Sun, Apr. 11th, 2010 09:24 pm (UTC)I also suspect that ENT do cameras up noses without thought it's no different to the thing they look your ears with to them! Although in practice sneezy and sorta ouchy even without shenanigans like your mum has going on. - I'm kinda used to it myself with 30 years experience of it, although last time I did have to say "You'll NEVER get THAT thing up there, you need a flexiscope mate" moment!
I'm glad your mum has some anti-sickness meds, I had been wondering what they'd given her and fi they were giving her enough or the right ones and whether I should say something to you about that. I always went with the take as many as you can dosage wise till the sickness abates as much as poss, if no abation request new anti sickness meds. If it comes to it, there are injectable ones which are really very good - and it may be worth something like daily district nurses if it improves your mum's ability to keep food down. Anaesthetists are probably the best people to ask about these sorts of meds actually as they use them extensively - same applies for pain meds in many cases in my experience.
I wish your mum all the best for tomorrow the plan with your auntie and uncle sounds superb, although I would be asking about hospital transport in future if you don't have an option of friends/family nearby as your points about public transport may not be something the doctors are aware of unless you Make It Really Clear In Very Small Words to them if you see what I mean!
Also I think it's useful to acknowledge the spoon loss and tiringness of supporting your mum through all fo this and what you can do to minimise spoon loss one way or another. Hopefully an answer (whatever that may be) is going to be better than this indeterminate state but assuming there's considerable treatment ahead you perhaps need to get support for you too - however possible.
I don't kow if there is anything I can do, but thinking of all your people, if there's stuff they can do keep taking them up on it - and using what support networks and systems you have for you! Also whether it's worth seeing your GP sometime soon and asking for pre-emptive support for yourself, if necessary meds or willingness for meds if you need them, counselling or whatever!
Wishing you all all of the best. Hope the packing PJs trick works as well!
no subject
Date: Sun, Apr. 11th, 2010 09:29 pm (UTC)no subject
Date: Sun, Apr. 11th, 2010 09:36 pm (UTC)I know if I had to drive away from my home to be somewhere else for a week at a time for months on end, my spoons would crash. I also know if I was caring for someone I cared for who lived very close to me, my spoons would also crash. To do both? I'm so impressed that you've managed for this long.
Please take time to do whatever it takes for you to spoons replenish. If that means more luxuries for yourself, phonecalls, or only eating from paper plates so you don't have to do the $%^&ing washing up, then do it.
You are incredible. Say if I can help x