help needed to find top cancer specialist...
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From: Scotland
does anyone know of something else she could ask for that wont make her into a zombie?
I'm no expert but from family experience and from the patients point of view Morphine is probably best.
Si
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From: Far Far Away
Originally Posted by sarasquares
things look like they are going downhill for us now
mum had a terrible weekend and yesterday she was coughing blood. she has been offered morphine now but i am worried cos morphine really knocks you out. does anyone know of something else she could ask for that wont make her into a zombie?
mum had a terrible weekend and yesterday she was coughing blood. she has been offered morphine now but i am worried cos morphine really knocks you out. does anyone know of something else she could ask for that wont make her into a zombie?
Am thinking about you hun, you know where I am, anytime
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From: It's like finding a cocktail sausage, when what you really wanted was a rather large saveloy.
Originally Posted by sarasquares
things look like they are going downhill for us now
mum had a terrible weekend and yesterday she was coughing blood. she has been offered morphine now but i am worried cos morphine really knocks you out. does anyone know of something else she could ask for that wont make her into a zombie?
mum had a terrible weekend and yesterday she was coughing blood. she has been offered morphine now but i am worried cos morphine really knocks you out. does anyone know of something else she could ask for that wont make her into a zombie?
Tell your mum to hang in there and that all of us are thinking of her (and you!!) .. Lots of hugs for you both.xx
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Hi Sara,
Was away for Easter seeing my owm Mum and sister.
I am sorry to hear your mum had a bad time. I hope she rallies around soon and starts to feel good again. I don't know whether the morphine would be better for her, maybe they can adjust the dosage so she gets the relief but without getting too knocked out by the effects.
So far I have not had any bad effects from the chemo, occasional slight nausea which soon passes and it does make me feel tired. Maybe as you say it will get worse as the treatment goes on longer.
All my best to you and your mum.
Les
Was away for Easter seeing my owm Mum and sister.
I am sorry to hear your mum had a bad time. I hope she rallies around soon and starts to feel good again. I don't know whether the morphine would be better for her, maybe they can adjust the dosage so she gets the relief but without getting too knocked out by the effects.
So far I have not had any bad effects from the chemo, occasional slight nausea which soon passes and it does make me feel tired. Maybe as you say it will get worse as the treatment goes on longer.
All my best to you and your mum.
Les
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From: Selling the scoob to buy a CTR
thanks guys 
glad its been ok so far Leslie, lets hope it stays that way
mums radiotherapy finished a week ago and we think thats why she feels so ****. she is going to try and save the morphine till she really needs it. we were told that small doses can help breathing but i dont know if this is true or not. we are having a private second opinion on Tuesday so hopefully, fingers crossed we will get all the answers we need. i have printed out a long list of questions that we will give to the doctors we are seeing.
i was horrified at the response we got from mums consultants secretary when we asked for the PET scan to be sent to the private doctor. she said that in all her time working for the two doctors she had never heard of any patients wanting another opinion, and she was saddened...i managed to tell her (before i did something i would regret later)that her own personal opinion didnt mean diddly **** and if she was going to have a problem with it then she would be reported
its been unbelievable the amount of hostility we have encountered in the last two months. as far as i can see its my mums life in their hands and they have a duty to honestly answer any questions they are asked.
when i lost my little sister a few years ago to a brain haemorage(sp) she was left in a side ward in A&E while the hospital spent hours phoning around different hospitals to find one that could take her ......5 hours were wasted when my sister could have had surgery. we was told at the time that the reason the hospitals declined was because her outlook wasnt good.......not cost effective in other words, who knows she may have lived if she had the surgery
am trying to be positive...honest
glad its been ok so far Leslie, lets hope it stays that way
mums radiotherapy finished a week ago and we think thats why she feels so ****. she is going to try and save the morphine till she really needs it. we were told that small doses can help breathing but i dont know if this is true or not. we are having a private second opinion on Tuesday so hopefully, fingers crossed we will get all the answers we need. i have printed out a long list of questions that we will give to the doctors we are seeing.
i was horrified at the response we got from mums consultants secretary when we asked for the PET scan to be sent to the private doctor. she said that in all her time working for the two doctors she had never heard of any patients wanting another opinion, and she was saddened...i managed to tell her (before i did something i would regret later)that her own personal opinion didnt mean diddly **** and if she was going to have a problem with it then she would be reported
its been unbelievable the amount of hostility we have encountered in the last two months. as far as i can see its my mums life in their hands and they have a duty to honestly answer any questions they are asked.
when i lost my little sister a few years ago to a brain haemorage(sp) she was left in a side ward in A&E while the hospital spent hours phoning around different hospitals to find one that could take her ......5 hours were wasted when my sister could have had surgery. we was told at the time that the reason the hospitals declined was because her outlook wasnt good.......not cost effective in other words, who knows she may have lived if she had the surgery
am trying to be positive...honest
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From: It's like finding a cocktail sausage, when what you really wanted was a rather large saveloy.
Squaresy - you have every right to ask for a second opinion - as you said it's your mum's life in their hands, and it's only a matter of course that you are going to have questions.. and whether or not the doctors previous patients have requested a second opinion doesnt matter - the secretary needs to have some respect and empathy!! Sometimes you only find things out if you ask!
Keep on at them, hun - I know you won't let them get away with anything. I hope you mum feels a bit rosier soon - you do feel completely wiped out after radiotherapy has finished - I know Dad wasn't himself for a while after.
Another trip to the hospital for us lot tomorrow ( well one visit of 3 to different hospitals for me!!). The consultant/surgeon didn't remove enough of a safety margin and wants to remove lymph nodes too - a course of radiotherapy is likely too... just as well she went for the mammogram
Love 'n' hugs to you bothxx
Keep on at them, hun - I know you won't let them get away with anything. I hope you mum feels a bit rosier soon - you do feel completely wiped out after radiotherapy has finished - I know Dad wasn't himself for a while after.
Another trip to the hospital for us lot tomorrow ( well one visit of 3 to different hospitals for me!!). The consultant/surgeon didn't remove enough of a safety margin and wants to remove lymph nodes too - a course of radiotherapy is likely too... just as well she went for the mammogram
Love 'n' hugs to you bothxx
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Sorry to hear of that attitude Sara, totally unjustified and I am glad you told her what's what! Hope you get some joy from the second opinion.
I am lucky in that I have had nothing but the best care and advice at my local hospital. Just finishing my first chemo cycle with no adverse side effects except for a bit of tiredness.
Best wishes for the next consultation
Les
I am lucky in that I have had nothing but the best care and advice at my local hospital. Just finishing my first chemo cycle with no adverse side effects except for a bit of tiredness.
Best wishes for the next consultation
Les
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From: Selling the scoob to buy a CTR
ive just got back from the Royal Marsden Hospital and have great news
we paid for a private second opinion and am the happiest girl in the world. the Marsden have offered to take mum on as an NHS patient because they want to give her chemo as it will extend her life
the oncologist at our own hospital said mum couldnt have any chemo as it would make her ill, they said she would lose the use of her legs and she would become incontinent. they said the tumour would not react to chemo, and that there was nothing they could do now.
at the Marsden we saw a top oncologist and another doc who does the radiotherapy, they both agreed that there was still quite a lot that can be done. they also told us that the pain mum has been in is due fron the radiotherapy and should only last for another week.......we now have hope. if i hadnt got this appointment today then it doesnt bare thinking about. mum was just waiting to die, now she has something to live for. thats priceless
i will be taking matters further regarding the discusting way mum was treated
we paid for a private second opinion and am the happiest girl in the world. the Marsden have offered to take mum on as an NHS patient because they want to give her chemo as it will extend her life
the oncologist at our own hospital said mum couldnt have any chemo as it would make her ill, they said she would lose the use of her legs and she would become incontinent. they said the tumour would not react to chemo, and that there was nothing they could do now.
at the Marsden we saw a top oncologist and another doc who does the radiotherapy, they both agreed that there was still quite a lot that can be done. they also told us that the pain mum has been in is due fron the radiotherapy and should only last for another week.......we now have hope. if i hadnt got this appointment today then it doesnt bare thinking about. mum was just waiting to die, now she has something to live for. thats priceless
i will be taking matters further regarding the discusting way mum was treated
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From: Selling the scoob to buy a CTR
i am on cloud nine tonight. i knew my mum didnt have to be treated like she was, where there's a will there's a way!
i live with my glass half full, not empty. i am a very determined person and never give up without a fight. this attitude has served me well in the past and today we feel like we have won the jackpot.
i advise anyone in a similar situation to do what their heart tells them
The Royal Marsden have just changed their policy on taking NHS patients, the timing was perfect
i live with my glass half full, not empty. i am a very determined person and never give up without a fight. this attitude has served me well in the past and today we feel like we have won the jackpot.
i advise anyone in a similar situation to do what their heart tells them
The Royal Marsden have just changed their policy on taking NHS patients, the timing was perfect
she's the best, am really glad for today's news 
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I am so pleased for you.
Our news is better. The last time my wife saw her oncologist in Aberdeen, just before her third session of chemo, he said the tumour in the lymph node had reduced considerably. She is one of 2 or 3 a year who present with a secondary in the lymph node, but no detectable primary in the breast. He was very optimistic about the outcome.
Keep your chin up.
Our news is better. The last time my wife saw her oncologist in Aberdeen, just before her third session of chemo, he said the tumour in the lymph node had reduced considerably. She is one of 2 or 3 a year who present with a secondary in the lymph node, but no detectable primary in the breast. He was very optimistic about the outcome.
Keep your chin up.
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From: Selling the scoob to buy a CTR
Originally Posted by CharlesW
I am so pleased for you.
Our news is better. The last time my wife saw her oncologist in Aberdeen, just before her third session of chemo, he said the tumour in the lymph node had reduced considerably. She is one of 2 or 3 a year who present with a secondary in the lymph node, but no detectable primary in the breast. He was very optimistic about the outcome.
Keep your chin up.
Our news is better. The last time my wife saw her oncologist in Aberdeen, just before her third session of chemo, he said the tumour in the lymph node had reduced considerably. She is one of 2 or 3 a year who present with a secondary in the lymph node, but no detectable primary in the breast. He was very optimistic about the outcome.
Keep your chin up.
so the chemo made a huge difference? its nice to have something positive happen, good luck to all of us
thanks lesley, mum thinks you are mad
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Thats wonderful news Sara, I congratulate you on sticking to your guns. Best of luck to your mum and you and I hope you will have some more real success to tell us about in time.
That original oncologist needs a good "sorting"
Les
That original oncologist needs a good "sorting"
Les
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From: use the Marauder's Map to find out.
Sara - firstly, I'm delighted that you've had good news.
A friend had cancer of the oesophagus a couple of years ago. He had an operation to remove the tumour and part of his stomach and this was followed up by at least 2 courses of chemo. As I understand it, the chemo is intended to kill/prevent secondary tumours developing.
This course of treatment was apparently unusual at the time as it was thought to have a low success rate. Now, as my friend's check-ups show that the chemo was very successful (no tumour, no secondary tumours developed, no inflammation of his oesophagus) this course of treatment is now standard practice (at least, in Scotland) for this type of cancer.
Chemo can make a huge difference.
Originally Posted by sarasquares
so the chemo made a huge difference?
This course of treatment was apparently unusual at the time as it was thought to have a low success rate. Now, as my friend's check-ups show that the chemo was very successful (no tumour, no secondary tumours developed, no inflammation of his oesophagus) this course of treatment is now standard practice (at least, in Scotland) for this type of cancer.
Chemo can make a huge difference.
Thread Starter
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From: Selling the scoob to buy a CTR
dynamix...
dont worry about the pm, i get them all the time
btw you are able to claim for a macmillan patients grant for your mum, just ask the GP or the nurses involved with her.
leslie.....the chinky oncologist is going to end up in a pancake roll soon
douglas......thats great news about the chemo, really encouraging. we have also been told that mums cancer is non small cell and it is slower growing than the small cell...........they said that it could stay stable for some time, so fingers crossed
dont worry about the pm, i get them all the time
btw you are able to claim for a macmillan patients grant for your mum, just ask the GP or the nurses involved with her.
leslie.....the chinky oncologist is going to end up in a pancake roll soon
douglas......thats great news about the chemo, really encouraging. we have also been told that mums cancer is non small cell and it is slower growing than the small cell...........they said that it could stay stable for some time, so fingers crossed
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From: It's like finding a cocktail sausage, when what you really wanted was a rather large saveloy.
SS - Nice one, sweetie! I'm so glad for you and your mum...
You stucks to your guns, and got what your mum needs - you should be proud of yourself
xx
You stucks to your guns, and got what your mum needs - you should be proud of yourself
xx
well finally getting somebleedingwhere !!!
mum has just had first chemo session with Gemcitabine and will be every week for 8 weeks then a couple of weeks off before next sessions every other week.
hopefully it will have a positive effect but the only effect so far has been tiring for her but at least the feeling of helplessness has gone and she now feels that she is at least getting some treatment !! instead of being ignored.
this is a dreadful process and the health service are in chaos despite their best efforts in the most part with staff moving departments and cutbacks, ward moves - seems that a huge amount of money is being wasted and not spent on what it should be.
admittedly I guess that the money they would be spending on my mum is only palliative but it makes a huge difference to her, to me and the rest of my family and without it, it would be hell on earth.
feel like a bit of a rant so please accept my apologies.
rollercoaster status... at the bottom but moving up
mum has just had first chemo session with Gemcitabine and will be every week for 8 weeks then a couple of weeks off before next sessions every other week.
hopefully it will have a positive effect but the only effect so far has been tiring for her but at least the feeling of helplessness has gone and she now feels that she is at least getting some treatment !! instead of being ignored.
this is a dreadful process and the health service are in chaos despite their best efforts in the most part with staff moving departments and cutbacks, ward moves - seems that a huge amount of money is being wasted and not spent on what it should be.
admittedly I guess that the money they would be spending on my mum is only palliative but it makes a huge difference to her, to me and the rest of my family and without it, it would be hell on earth.
feel like a bit of a rant so please accept my apologies.
rollercoaster status... at the bottom but moving up
Thread Starter
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From: Selling the scoob to buy a CTR
Originally Posted by dynamix
well finally getting somebleedingwhere !!!
mum has just had first chemo session with Gemcitabine and will be every week for 8 weeks then a couple of weeks off before next sessions every other week.
hopefully it will have a positive effect but the only effect so far has been tiring for her but at least the feeling of helplessness has gone and she now feels that she is at least getting some treatment !! instead of being ignored.
this is a dreadful process and the health service are in chaos despite their best efforts in the most part with staff moving departments and cutbacks, ward moves - seems that a huge amount of money is being wasted and not spent on what it should be.
admittedly I guess that the money they would be spending on my mum is only palliative but it makes a huge difference to her, to me and the rest of my family and without it, it would be hell on earth.
feel like a bit of a rant so please accept my apologies.
rollercoaster status... at the bottom but moving up
mum has just had first chemo session with Gemcitabine and will be every week for 8 weeks then a couple of weeks off before next sessions every other week.
hopefully it will have a positive effect but the only effect so far has been tiring for her but at least the feeling of helplessness has gone and she now feels that she is at least getting some treatment !! instead of being ignored.
this is a dreadful process and the health service are in chaos despite their best efforts in the most part with staff moving departments and cutbacks, ward moves - seems that a huge amount of money is being wasted and not spent on what it should be.
admittedly I guess that the money they would be spending on my mum is only palliative but it makes a huge difference to her, to me and the rest of my family and without it, it would be hell on earth.
feel like a bit of a rant so please accept my apologies.
rollercoaster status... at the bottom but moving up
you have to fight for everything that you are entitled to. we were told by the pancake roll that mum couldnt have chemo but as you know we managed to change that. my mum will be having a 9 week course. mum said today that she doesnt feel she has been left to die now. even if the chemo doesnt work at least they are not waiting to die, they have something to live for. hope your mum can handle the chemo, she will feel worse before she feels better, am really happy for you
thanks sara
its that being left to die like a old unwanted plant in the garden feeling - you've had your flowering time, now put you on the compost heap.... i am sure they dont want to do it but i guess they have to de-sensitise themselves from it all.
- next job is to see my sisters twins that she had last week 5 weeks early
its that being left to die like a old unwanted plant in the garden feeling - you've had your flowering time, now put you on the compost heap.... i am sure they dont want to do it but i guess they have to de-sensitise themselves from it all.
- next job is to see my sisters twins that she had last week 5 weeks early
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From: Selling the scoob to buy a CTR
Originally Posted by dynamix
thanks sara
its that being left to die like a old unwanted plant in the garden feeling - you've had your flowering time, now put you on the compost heap.... i am sure they dont want to do it but i guess they have to de-sensitise themselves from it all.
- next job is to see my sisters twins that she had last week 5 weeks early
its that being left to die like a old unwanted plant in the garden feeling - you've had your flowering time, now put you on the compost heap.... i am sure they dont want to do it but i guess they have to de-sensitise themselves from it all.
- next job is to see my sisters twins that she had last week 5 weeks early
at least the babies will give your mum a reason to fight this, post some pics of the babies if you can