help needed to find top cancer specialist...
spooky 
28 April 2006, 12:25 PM
#214
Originally Posted by Leslie
Glad to see your news too dynamix. Look forward to hearing more good news from both of you.
Why does your mum think I am mad Sara, even if she is probably right
Les
Why does your mum think I am mad Sara, even if she is probably right
Les
are you mad as well
i have been slowely going mad
05 May 2006, 07:57 AM
#216
update....
got the ok to fly abroard in about 10 days time
mum has been very unwell these last few weeks from the radiotherapy but we are over the worst now.
we found out that there are over 150 types of chemo and it is unlikely mum will lose her hair when the treatment starts. weve bought loads of head scarves and hats but we dont need them now
leslie i hope your chemo is going well and dynamix i hope yor mums chemo is working out too
got the ok to fly abroard in about 10 days time
mum has been very unwell these last few weeks from the radiotherapy but we are over the worst now.
we found out that there are over 150 types of chemo and it is unlikely mum will lose her hair when the treatment starts. weve bought loads of head scarves and hats but we dont need them now
leslie i hope your chemo is going well and dynamix i hope yor mums chemo is working out too
05 May 2006, 08:43 AM
#217
sara
mums chemo is two weeks in now and she is worse than ever
- on gemcitabine and it is making everything taste salty and subsequently she cannot take any food or drink without immediately throwing it back up. It is really worrying me now as she has hardly eaten for a week now apart from one day and is losing even more weight.
She is back on the driver drip with morphine and anti-nausia solution to try and control it but the doseage doesnt seem to be right - just hope they get it right before it is too late.
Overall she feels cr@p and we are not hopeful of much improvement so subsequently we all feel that way too. We are trying to keep her spirits up but it is blinking difficult to remain positive when she is not enjoying herself at all and part of me wishes the worst so that the pain stops - that thought does not make me feel good about myself too... vicious circle type of thing here atm.
Have thought about hypnotherapy to try and overcome the salty taste/wanting to throw up part - has anyone tried that? - will it work/does it really work?
Macmillans are in with her every day at the mo which is helping her but when i spoke to macmillans, they said that they only do that in the latter stages - guess we are there then.
bugger.
mums chemo is two weeks in now and she is worse than ever
- on gemcitabine and it is making everything taste salty and subsequently she cannot take any food or drink without immediately throwing it back up. It is really worrying me now as she has hardly eaten for a week now apart from one day and is losing even more weight.She is back on the driver drip with morphine and anti-nausia solution to try and control it but the doseage doesnt seem to be right - just hope they get it right before it is too late.
Overall she feels cr@p and we are not hopeful of much improvement so subsequently we all feel that way too. We are trying to keep her spirits up but it is blinking difficult to remain positive when she is not enjoying herself at all and part of me wishes the worst so that the pain stops - that thought does not make me feel good about myself too... vicious circle type of thing here atm.
Have thought about hypnotherapy to try and overcome the salty taste/wanting to throw up part - has anyone tried that? - will it work/does it really work?
Macmillans are in with her every day at the mo which is helping her but when i spoke to macmillans, they said that they only do that in the latter stages - guess we are there then.
bugger.
05 May 2006, 09:28 AM
#218
i really feel for you. its soul destroying having to watch your mum go through so much. i can understand why cancer patients refuse the chemo after a while. you have to ask yourself the BIG questions...will the chemo give your mum any benefits at this stage? is she only having it so she is going through the motions of treatment? my mum said that if it makes her so ill that she cant enjoy her time left she wont have it. it will be hard on us if she decides to refuse chemo, but at the end of the day we will have to live with whatever mum chooses to do. my mum hasnt been very positive lately and i have to keep stressing that if she is not mentally positive her body will follow. she keeps saying she cant fight this and wants to give in. yesterday my mum said she will take her own life if it gets to hard. this was a massive blow to me and its taken all my strength to change her mind set and boost her up. my own family life has had to come second to my mums needs atm and as i have a 5 year old daughter with special needs i am finding it nearly impossible to function normally. work has had to take a back seat which is proving a problem. the only thing keeping mum going is the holiday, when we return the chemo starts. i am dreading the chemo as i know it is going to take its toll, i just hope it works out.
i hope your mum can get over this period and come out of the other side
keep your spirits up as your mum will draw strength from you
i hope your mum can get over this period and come out of the other side
keep your spirits up as your mum will draw strength from you
05 May 2006, 10:19 AM
#219
thanks sara - i really hope you have a great time on holiday and have some special memories ... mallorca again? - sunshine always has a warming effect.
it is very weird coping with this process as a "grown up" with your parents relying on you....
it is very weird coping with this process as a "grown up" with your parents relying on you....
05 May 2006, 11:42 AM
#220
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Dynamix,
I had that salty taste problem immediately after the operation but long before I started the chemo. Its a reall nuisance too, I lost my appetite completely and lost 38 lbs weight beacause of it-after the tumour was gone that is.
It took 5 weeks to get over it, seemed to happen over only 3 days. My Chemo has not started the taste problem again. Hope your mum gets over it soon too.
Have a great holiday Sara, you well deserve it. Best wishes to your mum.
Les
I had that salty taste problem immediately after the operation but long before I started the chemo. Its a reall nuisance too, I lost my appetite completely and lost 38 lbs weight beacause of it-after the tumour was gone that is.
It took 5 weeks to get over it, seemed to happen over only 3 days. My Chemo has not started the taste problem again. Hope your mum gets over it soon too.
Have a great holiday Sara, you well deserve it. Best wishes to your mum.
Les
05 May 2006, 05:25 PM
#221
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Leslie, dynamix and all,
Sara phoned me this afternoon, she has had to go the hospital. They have taken her mum in. She keeps losing her balance, and they want to check it out. Don't know anymore details. She will phone me as soon as she knows anything.
Hope you are all ok
Lesley x
Sara phoned me this afternoon, she has had to go the hospital. They have taken her mum in. She keeps losing her balance, and they want to check it out. Don't know anymore details. She will phone me as soon as she knows anything.
Hope you are all ok
Lesley x
05 May 2006, 11:37 PM
#222
Originally Posted by 84of300
Leslie, dynamix and all,
Sara phoned me this afternoon, she has had to go the hospital. They have taken her mum in. She keeps losing her balance, and they want to check it out. Don't know anymore details. She will phone me as soon as she knows anything.
Hope you are all ok
Lesley x
Sara phoned me this afternoon, she has had to go the hospital. They have taken her mum in. She keeps losing her balance, and they want to check it out. Don't know anymore details. She will phone me as soon as she knows anything.
Hope you are all ok
Lesley x
life stinks
sorry that was so depressing, but thats how it is
05 May 2006, 11:41 PM
#223
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Originally Posted by sarasquares
meant to post earlier.. my mum lost the strength in her right hand a couple of days ago and her writing looks odd. she keeps losing her balance as well. i called the doc and when he saw her he called an ambulance. he thinks that she may have had a stroke. but there is another possible development. the cancer may have spread to her brain.they were unable to arrange a scan before 5pm as there were no staff around to do it, hopefully she will get one tomorrow. we were warned that if it has spread to her brain we could lose her in just a few days.
life stinks
sorry that was so depressing, but thats how it is
life stinks
sorry that was so depressing, but thats how it is
Last edited by little-ginge; 05 May 2006 at 11:43 PM.
05 May 2006, 11:46 PM
#224
it came out of the blue, i am dreading the phone ringing, cant imagine i will sleep tonight. mum has been feeling unwell for a while and i sort of told her to pull herself together and fight it, now i feel terrible that i pushed her when something was wrong
06 May 2006, 10:38 AM
#228
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Thanks Lesley for the information.
Sara, I am so sorry to hear about your mum's setback, I really hope that it all sorts out and she soon feels fit again. Please give her my best wishes and to you too of course.
Les
Sara, I am so sorry to hear about your mum's setback, I really hope that it all sorts out and she soon feels fit again. Please give her my best wishes and to you too of course.
Les
06 May 2006, 01:31 PM
#229
just got the worst news possible. my mum has had a scan this morning and a mass has been found on her brain. not sure of the full diagnosis yet as the scan has been sent to the Royal Free Hospital. we should know more later.
until yesterday we had no idea that this was a possibility as the PET scan showed nothing apart from a node in her neck, but the radiotherapy zapped that. i dont think mum has very long left
thanks for saying all the right things
i will keep you all informed
until yesterday we had no idea that this was a possibility as the PET scan showed nothing apart from a node in her neck, but the radiotherapy zapped that. i dont think mum has very long left
thanks for saying all the right things
i will keep you all informed
07 May 2006, 08:01 AM
#232
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Sara,
I'm really sorry to hear this news, hope some more light comes in the next couple of days. Been following this thread for a few weeks now and I think your're being a real hero for your Mum.
My wife lost her mum to lung cancer six years ago so I have to draw some comparisons. Some of your comments bring things back, particularly the earlier, more angry posts searching for reasons and things or people to blame, then the high and low days. Looks like you've settled into accepting things now and I'm sure this is good. I know you know this but you must enjoy the time you have with your Mum now. My wifes Mum went through four months of chemo and radiotherapy which made her really ill but did shrink her tumour. However a couple of weeks after this had finished she started to become confused and it was discovered that the cancer had spread to her brain. Her alertness level gradually dropped and she died peacefully a few weeks later. Our feeling in hindsight is that the treatment only made her sick and didn't help really at all, although of course we've no idea how things would have panned out without it. I think what your Mum has said about this makes so much sense. I understand though that these types of brain tumours can respond very well to high doses of steroids so this may be an option in your case. They act by reducing swelling in and around the tumour as most of the symtoms are caused by an increase in pressure. I have heard of people who's symptoms from the brain tumour were eliminated for several weeks but it didn't help in our case though.
pm me if you want to ask anything else. Keep doing what you're doing in the meantime. I hope you have some more good news soon.
A
I'm really sorry to hear this news, hope some more light comes in the next couple of days. Been following this thread for a few weeks now and I think your're being a real hero for your Mum.
My wife lost her mum to lung cancer six years ago so I have to draw some comparisons. Some of your comments bring things back, particularly the earlier, more angry posts searching for reasons and things or people to blame, then the high and low days. Looks like you've settled into accepting things now and I'm sure this is good. I know you know this but you must enjoy the time you have with your Mum now. My wifes Mum went through four months of chemo and radiotherapy which made her really ill but did shrink her tumour. However a couple of weeks after this had finished she started to become confused and it was discovered that the cancer had spread to her brain. Her alertness level gradually dropped and she died peacefully a few weeks later. Our feeling in hindsight is that the treatment only made her sick and didn't help really at all, although of course we've no idea how things would have panned out without it. I think what your Mum has said about this makes so much sense. I understand though that these types of brain tumours can respond very well to high doses of steroids so this may be an option in your case. They act by reducing swelling in and around the tumour as most of the symtoms are caused by an increase in pressure. I have heard of people who's symptoms from the brain tumour were eliminated for several weeks but it didn't help in our case though.
pm me if you want to ask anything else. Keep doing what you're doing in the meantime. I hope you have some more good news soon.
A
07 May 2006, 10:31 AM
#233
we are going to be in the same situation i think
mum had her scan yesterday and they have found not one but two metastas(sp) leasions on the brain, as yet we do not know any more than that. i have to ring the Marsden in the morning to see what is the next step.
mums life was put at risk by our local hospital yesterday. when she was discharged she had not been given any medication while she was in or to take home, but to pick up a prescription tonight for steroids to reduce the swelling and the doctor told her she would still be able to go on holiday next saturday.i felt this was wrong so i rang the ward for more information a nurse told us that my mum should not be left on her own at all and she could have a seizure or stroke at any time. we had conflicting information from the two sources, so i thought i'd ring the Marsden as mum has been refered there and couldnt believe what we were told, they went mental and rang our local hospital and told them that my mum cannot possible wait till tonight to take the steroids and we were able to collect the tablets at 11.30 pm last night. when i rang the ward back a nurse told me that because it was the weekend they dont have access to the pharmacy. i ended up screaming down the phone that they put my mums life at risk because they didnt have access to feckin steroids(its funny how they managed to find them in the end, and its the same hospital that my son died through negligence, and my sister died from a brain haemorage)
the marsden also said that mum cannot travel. my mum can barely walk and her speach is slurred amongst other things.
she was due to start chemo later this month so i assume mum will be given the option of not having the chemo as it looks like the will die much sooner fron the brain cancer anyway. mum has said she will have radiotherapy for her brain if its an option.
i really didnt expect things would deteriate this quickly. this is so hard to take in. i dont think i can give my mum anymore hope now. mum says she feels she is dying...............i dont know what to do anymore
andrew i might pm you sometime today, thanks
mum had her scan yesterday and they have found not one but two metastas(sp) leasions on the brain, as yet we do not know any more than that. i have to ring the Marsden in the morning to see what is the next step.
mums life was put at risk by our local hospital yesterday. when she was discharged she had not been given any medication while she was in or to take home, but to pick up a prescription tonight for steroids to reduce the swelling and the doctor told her she would still be able to go on holiday next saturday.i felt this was wrong so i rang the ward for more information a nurse told us that my mum should not be left on her own at all and she could have a seizure or stroke at any time. we had conflicting information from the two sources, so i thought i'd ring the Marsden as mum has been refered there and couldnt believe what we were told, they went mental and rang our local hospital and told them that my mum cannot possible wait till tonight to take the steroids and we were able to collect the tablets at 11.30 pm last night. when i rang the ward back a nurse told me that because it was the weekend they dont have access to the pharmacy. i ended up screaming down the phone that they put my mums life at risk because they didnt have access to feckin steroids
(its funny how they managed to find them in the end, and its the same hospital that my son died through negligence, and my sister died from a brain haemorage)the marsden also said that mum cannot travel. my mum can barely walk and her speach is slurred amongst other things.
she was due to start chemo later this month so i assume mum will be given the option of not having the chemo as it looks like the will die much sooner fron the brain cancer anyway. mum has said she will have radiotherapy for her brain if its an option.
i really didnt expect things would deteriate this quickly. this is so hard to take in. i dont think i can give my mum anymore hope now. mum says she feels she is dying...............i dont know what to do anymore
andrew i might pm you sometime today, thanks
07 May 2006, 10:36 AM
#234
Originally Posted by sarasquares
i really didnt expect things would deteriate this quickly. this is so hard to take in. i dont think i can give my mum anymore hope now. mum says she feels she is dying...............i dont know what to do anymore
07 May 2006, 10:53 AM
#235
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Sara and dymamix,
I feel so sorry for you both and your mums. Difficult to know what more to say. The only thing you can do Sara is to keep giving your mum all that support as you have been.
Can't believe the performance of your local hospital and the attitude towards the essential medication that your mother needs. I think they need a very large bomb under them, starting with the "Pancake Roll"! Thank your lucky stars for the Marsden.
Hope you might be able to give us some better news soon
Les
I feel so sorry for you both and your mums. Difficult to know what more to say. The only thing you can do Sara is to keep giving your mum all that support as you have been.
Can't believe the performance of your local hospital and the attitude towards the essential medication that your mother needs. I think they need a very large bomb under them, starting with the "Pancake Roll"! Thank your lucky stars for the Marsden.
Hope you might be able to give us some better news soon
Les
07 May 2006, 11:23 AM
#236
i just hope i can find the strength to get her through this. mum is using my energy to keep herself going but its taking its toll though. i may have to move into my mums soon because my dad needs to go to work, but i am hoping that they will let him take time off soon. i have lost weight through the stress of coping on my own, its times like this when i am missing not having a partner to support me.
dynamix i hope your mum can pick herself up. i am constantly trying to keep mum positive but i am fighting a losing battle. its important to keep your mum going even if it feels like you are being too hard on her.
is your treatment going well leslie? you are an inspiration to all of us as you have been through this before. i have everything crossed for us all
heads are definatly going to pancake roll for sure
dynamix i hope your mum can pick herself up. i am constantly trying to keep mum positive but i am fighting a losing battle. its important to keep your mum going even if it feels like you are being too hard on her.
is your treatment going well leslie? you are an inspiration to all of us as you have been through this before. i have everything crossed for us all
heads are definatly going to pancake roll for sure
08 May 2006, 10:57 AM
#237
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So far its ok thanks Sara, I am on the second cycle of the chemo-got another 4 to do after that. I have not had any of the nasty side effects yet except that it does make me feel unusually tired. Its a small price to pay though as long as the chemo does the business in the end.
It is hard on you of course, you need as much support as you can get and I hope your dad can get time off to help as well. Good luck and I hope you get a bit of free time occasionally to let your hair down.
Les
It is hard on you of course, you need as much support as you can get and I hope your dad can get time off to help as well. Good luck and I hope you get a bit of free time occasionally to let your hair down.
Les
08 May 2006, 03:17 PM
#238
Originally Posted by Leslie
So far its ok thanks Sara, I am on the second cycle of the chemo-got another 4 to do after that. I have not had any of the nasty side effects yet except that it does make me feel unusually tired. Its a small price to pay though as long as the chemo does the business in the end.
It is hard on you of course, you need as much support as you can get and I hope your dad can get time off to help as well. Good luck and I hope you get a bit of free time occasionally to let your hair down.
Les
It is hard on you of course, you need as much support as you can get and I hope your dad can get time off to help as well. Good luck and I hope you get a bit of free time occasionally to let your hair down.
Les
i have some better news this time. my mum is starting to regain the functions she lost last week. the first dose of steroids she took at midnight on saturday night had an effect by the following morning and she has continued to improve. her speach is now normal and she can walk. its unbelievable that she was told to collect the first dose of steroids only last night. if we had waited she may not be here today. i am taking her to the Marsden tomorrow for more tests. mum is convinced she is well enough to fly at the weekend, i think thats whats keeping her going. we will know tomorrow if she can go, i sort of hope she cant because i dont think she is well enough, but is she gets the go ahead then its her decision
can you all cross fingers and toes for us tomorrow please
