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Old 06 April 2006, 03:39 PM
  #151  
2000TLondon
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I'm afraid I disagree, Diablo. Obviously every case is different and everyone has a different view. I am sorry to hear your sad news which must have been very shocking given the timeframe.

I believe that positive thought is a great weapon in fighting ill health. My mother-in-law was in advanced stages when she was diagnosed as being terminal, and it had ravaged her, she was given six months max and in the end she fought it for over four years, with long spells of high quality life.

Circumstances, situations, people and the disease are always very different, but I think a positive, yet realistic, outlook is the best frame of mind.
Old 06 April 2006, 03:41 PM
  #152  
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thats terrible that you just lost your father in law Diablo

it sounds like their conditions were pretty similar, mums tumour is in the upper left lung as opposed to lower in the lung. i know that what you are saying is probaby right and that we should try to enjoy what we have left, but there is a very persistant part of me that says we would enjoy it more if we had more time
it will only be when we find out that there was nothing extra that could have been done that we will accept it. having hope has surely got to be the healthier way of getting through this as long as it doesnt dominate the big picture. we all want to be one of those that you read about, where the doctors got it wrong. i am not religious, sensible or delusional i fully understand all the implications but i am scared that when its all over i will have doubts that if i had tried a bit harder i might have been able to make a difference regret is a hard thing to overcome and i dont intend to have too many. as i feel so helpless this is what keels me going. i have hardly been to work in the last 6 weeks or so and am without a partner so i have no one to help me through this. i know that it will all come to nothing and we wont stumble across that missing bit of information that could make all the difference, but at least i can say that i did everything i possibly could

Last edited by sarasquares; 06 April 2006 at 03:44 PM.
Old 06 April 2006, 03:47 PM
  #153  
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Don't think afterwards that there might have been something you could have done that would make a difference, My mum still says now that she feels 'guilty' about what happened to my dad, I don't understand really what she means but I think she means in the sense that she was trying to push for things that might have helped my dad but nothng could be done and because nothing could be done then she is the one feeling guilty. It is awful to have a guilty feeling afterwards or feel like you let the person down, but you can't blame yourself.
Old 06 April 2006, 03:49 PM
  #154  
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As I have said before on this thread, Sara, my wife and I felt regret that we didn't spend as much time with my mother-in-law as maybe we could have. Although at the time we were spending as much time as we could, my brother-in-law was doing most of the running around the hospital and whatnot.

And my mother-in-law always acted as if nothing was ever wrong, so we seemed to forget, almost, and it wasn't until the end I realised we could have been there so much more. Although I haven't discussed this with my wife in detail, that was a mistake on our part.

So by you spending so much time with your mum and putting so much energy into this, means the world to her I am sure. There will always be many things to regret, no matter what you do, you'll always have a nagging feeling to some degree as that's natural. Try to find a healthy balance with your use of time, and try not to let the care and treatment get in the way of having real quality time together!
Old 06 April 2006, 03:51 PM
  #155  
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Originally Posted by 2000TLondon
I'm afraid I disagree, Diablo. Obviously every case is different and everyone has a different view. I am sorry to hear your sad news which must have been very shocking given the timeframe.

I believe that positive thought is a great weapon in fighting ill health. My mother-in-law was in advanced stages when she was diagnosed as being terminal, and it had ravaged her, she was given six months max and in the end she fought it for over four years, with long spells of high quality life.

Circumstances, situations, people and the disease are always very different, but I think a positive, yet realistic, outlook is the best frame of mind.
I agree, but you have to prepare for the worst.

For one, it makes it much easier to deal with. Lunng cancer is, however, one of the worst. If Sarah's mum is getting pains in her back and spine, that's not good news (probably secondary cancer) and I have based my comments on the information Sarah has provided thus far in the thread.
Old 06 April 2006, 03:52 PM
  #156  
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Originally Posted by Diablo
I agree, but you have to prepare for the worst.

For one, it makes it much easier to deal with. Lunng cancer is, however, one of the worst. If Sarah's mum is getting pains in her back and spine, that's not good news (probably secondary cancer) and I have based my comments on the information Sarah has provided thus far in the thread.
Yes, you are absolutely right, you have to be realistic, and being prepared will make it as easier as it can be made, but with a healthy dash of optimism, I think.
Old 06 April 2006, 03:55 PM
  #157  
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Originally Posted by sarasquares
thats terrible that you just lost your father in law Diablo

it sounds like their conditions were pretty similar, mums tumour is in the upper left lung as opposed to lower in the lung. i know that what you are saying is probaby right and that we should try to enjoy what we have left, but there is a very persistant part of me that says we would enjoy it more if we had more time
it will only be when we find out that there was nothing extra that could have been done that we will accept it. having hope has surely got to be the healthier way of getting through this as long as it doesnt dominate the big picture. we all want to be one of those that you read about, where the doctors got it wrong. i am not religious, sensible or delusional i fully understand all the implications but i am scared that when its all over i will have doubts that if i had tried a bit harder i might have been able to make a difference regret is a hard thing to overcome and i dont intend to have too many. as i feel so helpless this is what keels me going. i have hardly been to work in the last 6 weeks or so and am without a partner so i have no one to help me through this. i know that it will all come to nothing and we wont stumble across that missing bit of information that could make all the difference, but at least i can say that i did everything i possibly could
Never have doubts you could have done more, Sarah. And if you need to do this for you, then you go for it, but make sure you balance that with quality time
Old 06 April 2006, 03:56 PM
  #158  
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Originally Posted by 2000TLondon
Yes, you are absolutely right, you have to be realistic, and being prepared will make it as easier as it can be made, but with a healthy dash of optimism, I think.
Can't say fairer than that
Old 06 April 2006, 03:57 PM
  #159  
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Originally Posted by Diablo
I agree, but you have to prepare for the worst.

For one, it makes it much easier to deal with. Lunng cancer is, however, one of the worst. If Sarah's mum is getting pains in her back and spine, that's not good news (probably secondary cancer) and I have based my comments on the information Sarah has provided thus far in the thread.
the PET scan showed that the cancer had only spread to a neck lymph node. the chest nodes are obviousely affected but only one neck node which makes me think if this one could be removed then her spread would be much slower.
the pain mum has is intermittant and unexplained. she is only taking Voltoral for the pain and it works ok for now.
i dont know how fast cancer can spread and if it could have since the scan was done
Old 06 April 2006, 04:38 PM
  #160  
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I really feel for you Sara, I lost my dad to cancer 6 years ago and my mum had a kidney removed last year because of cancer, hopefully she is now OK (touch wood). It must be incredibly difficult if you don't get on with the oncologist, my mum's was so helpful and it made such a difference and also if you have no-one to talk to about it, it must be unbearable. Perhaps you could find someone else at the hospital to speak to, there's normally a caring kind of person to have as a contact if you have any worries.

As long as you are there with your mum as much as you can be and as long as she knows that you love her, then I don't think you'll have any regrets.

Take care.

Paul.
Old 06 April 2006, 04:50 PM
  #161  
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Feeling guilty, useless and convinced you could have done more are all perfectly natural reactions. Not pleasant, but perfectly natural.

It's vital that you get some sort of support and a breather from the situation - can the MacMillan nurses point you in the right direction for some counselling?

Go out on the lash with your mates for a night - let your hair down and have as much fun as you can. Not easy I know and I'm sure you'll feel guilty - but give it a go if you can. Your mum will also be worryong about you and what she's putting you through - to see you going out and being 'normal' will probably help her too.

I really feel for you and understand sooooo much of what you're going through. Try not to count the days - just enjoy every moment you can as much as you can.
Old 06 April 2006, 05:16 PM
  #162  
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i went out on the lash yesterday afternoon with my sister for her birthday

felt like crap this morning, but i am glad i blew some cobwebs away. i think there may be a few more booze filled afternoons this summer.thank god for drink
Old 06 April 2006, 08:23 PM
  #163  
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Sarah, a few honest questions,

I understand the situation your in, and i appreciate its very hard.

does your mum know that her situation is being discussed on an open board??
form experiance i have seen this situation before, where members of the family fight a crusade, for a loved one, and in reality the loved ones, whishes have been ignored..

i find your comment about your dad? odd, look at it from his point of view, and this is harsh i,m afraid, he is going to loose his soulmate, and he probably knows with certainty that it is inevitable. Imagine how he feels watching as you do knowing that he can do nothing. You need to include him in your plans asap, or you may find that there is another loss soon after.

I know this from experiance, and its certianly not an isolated case.

pehaps you need to spend some time with your dad as well, he may not be able to cope as well as you or you mum,

Mart
Old 07 April 2006, 12:32 PM
  #164  
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Originally Posted by mart360
Sarah, a few honest questions,

I understand the situation your in, and i appreciate its very hard.

does your mum know that her situation is being discussed on an open board??
form experiance i have seen this situation before, where members of the family fight a crusade, for a loved one, and in reality the loved ones, whishes have been ignored..

i find your comment about your dad? odd, look at it from his point of view, and this is harsh i,m afraid, he is going to loose his soulmate, and he probably knows with certainty that it is inevitable. Imagine how he feels watching as you do knowing that he can do nothing. You need to include him in your plans asap, or you may find that there is another loss soon after.

I know this from experiance, and its certianly not an isolated case.

pehaps you need to spend some time with your dad as well, he may not be able to cope as well as you or you mum,

Mart
my mum is well aware that i have this thread running and she regulary reads it. not only has it helped me but it has helped her too and for which she is grateful.
my dad works full time as he has not retired yet so he is unable to look after mum during the day but he is there for her the rest of the time. he is very included in whats happening but is handling it different to us.
he knows he will lose his wife/soulmate and friend soon but like many men he finds it very hard to show his feelings. there is no way that anyones wishes are being ignored or overlooked
Old 08 April 2006, 11:36 PM
  #165  
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my mum finally got to see an oncologist yesterday and they have recommended chemo for her - gemcitabine - this will start in a week.

hopefully this will have a positive effect on her and maybe even help her into remission. We know it will not avoid the inevitable - we all die sometime - but hopefully it will prolong it.

sara - i am sure that your family is as together as mine is at this time - life is too short and talking about it helps me so am sure it has helped you too and through doing that has helped your mum and rest of your family.

looking back on this thread in years to come may be painful but will act as a pointer to our feelings.

men can be coaxed to show their feelings - i dont most of the time but vowed when this was discovered that i would not bottle it up inside like i do most other things. I am sure your dad has his own way of dealing with things.

best wishes as ever.
Old 09 April 2006, 11:40 AM
  #166  
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Hi Sara,

Been offline for a couple of days. I am really astonished at the attitude of that oncologist. I think he could have been reasonable even if he thinks that he is so expert that he does not need any suggestions from a patient. Very unpleasant way to behave.

I think that it would still be worth trying to find another oncologist who may have different ideas and who could give some practical help in your mum's case. I hope you can find one.

Thanks for your good wishes. I actually start Tuesday morning, they gave me the tablets last Wednesday to start on the 11th. It sounds like an enormous dose to me-2500 Mg in the morning and the same at night. I was a bit worried about it but discovered today that is the normal starting dose. Not looking forward to any side effects of course.

Best wishes to your Mum.

Les

Last edited by Leslie; 09 April 2006 at 11:47 AM.
Old 09 April 2006, 01:03 PM
  #167  
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hi leslie and dynamix

my mums gp had heard about this oncologist before and he is going to complain on mums behalf. he told us that mum needed 3 weekly courses of radio, but when it came to the planning appointment he told us mum would only recieve one weeks radio and thats the lot. he said her node in the neck was very small and hopefully it would be zapped with one weeks treatment. but he said she does not need repeat scans to check on the status after treatment....thats it
i thought that mum would be re-scanned at a later date to see if the radio was successfull or if she needed more. when i mentioned it he said that we wasnt to worry ourselves about future treatment....WTF are we supposed to make from that
i have made steps for a private consultation with another oncologist. even if the predictions are the same we will get all the info we need from one person who is sympathetic and will answer any questions we ask, peace of mind is priceless

i dont know about doses and stuff with the chemo but i know you are going to have a hard time as chemo isnt nice. hopefully you will benefit from all this and it will be worth it.i will be thinking of you

dynamix....it sounds like your mums cancer might be partially treatable. as i understand chemo isnt used if there isnt much life expectancy, so hopefully you will gain something for this....here's hoping
mum was very ill yesterday from her treatment on friday so she is dreading the next 4 days, but we are hoping it will be worth it
Old 09 April 2006, 06:44 PM
  #168  
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Originally Posted by sarasquares
hi leslie and dynamix

my mums gp had heard about this oncologist before and he is going to complain on mums behalf. he told us that mum needed 3 weekly courses of radio, but when it came to the planning appointment he told us mum would only recieve one weeks radio and thats the lot. he said her node in the neck was very small and hopefully it would be zapped with one weeks treatment. but he said she does not need repeat scans to check on the status after treatment....thats it
i thought that mum would be re-scanned at a later date to see if the radio was successfull or if she needed more. when i mentioned it he said that we wasnt to worry ourselves about future treatment....WTF are we supposed to make from that
i have made steps for a private consultation with another oncologist. even if the predictions are the same we will get all the info we need from one person who is sympathetic and will answer any questions we ask, peace of mind is priceless

i dont know about doses and stuff with the chemo but i know you are going to have a hard time as chemo isnt nice. hopefully you will benefit from all this and it will be worth it.i will be thinking of you

dynamix....it sounds like your mums cancer might be partially treatable. as i understand chemo isnt used if there isnt much life expectancy, so hopefully you will gain something for this....here's hoping
mum was very ill yesterday from her treatment on friday so she is dreading the next 4 days, but we are hoping it will be worth it
thanks sara - we hope that the treatment will extend the time left but at the moment it was more importaant for her to feel that she wasnt being ignored by the hospital - hadnt seen a oncologist until now...and then all of a sudden in the next tax/budget year a phone call and next day appointment.....call me a cynic but that sucks big style.

sara - dont know where you are based but your GP can and probably should refer her/you to Royal Marsden - probably the best in the land for assessment & treatment. Their website has all the details of how to do this.

I hope this helps.

and whatever happens - keep thinking of the chocolatte bunnies - cracks me up that does
Old 10 April 2006, 08:08 AM
  #169  
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I have been following this thread with some interest as my wife has recently been diagnosed with Stage 2 breast cancer and is currently undergoing chemotherapy prior to surgery in the summer.

I know the prognosis for breast cancer is better than that for lung cancer, but initially you still experience the same shock and even despair. Then you think it through and find some hope and take things a day at a time.

I have just read this in todays Telegraph on-line. It mentions some new treatment - Iressa and another drug Tarceva, which are Epidermal Growth Factor Receptor Inhibitors. It might be of interest to you.

Oops. I forgot the URL

http://www.telegraph.co.uk/fashion/m...tsmoking09.xml

Anyway I hope things go well with you and your mum.
Old 10 April 2006, 08:28 AM
  #170  
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bugger ... my mum was taken into hospital last night as she couldnt hold any food or fluids and needs to be put on drip.
Old 10 April 2006, 11:19 AM
  #171  
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Originally Posted by dynamix
bugger ... my mum was taken into hospital last night as she couldnt hold any food or fluids and needs to be put on drip.
Really sorry to hear that, fingers crossed she's soon back home again
Old 10 April 2006, 11:36 AM
  #172  
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Originally Posted by dynamix
bugger ... my mum was taken into hospital last night as she couldnt hold any food or fluids and needs to be put on drip.
OMG
i hope its only a minor setback

thats the thing one minute my mum says she feels like she will live till she's 90 and the next day she thinks that she has had her lot.

i hope she gets back on her feet soon

breast cancer isnt the death sentence it used to be but its still a horrible road to go down, good luck Charles
Old 10 April 2006, 11:47 AM
  #173  
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lets hope so too.

am due to go on holiday on thursday for 10 days - really dont know what to do... will have to play it by ear and make a decision tomorrow.
Old 10 April 2006, 12:22 PM
  #174  
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same here,i was going to book somewhere for me and mum but i will have to do a last minute thing now. oh well
Old 11 April 2006, 10:20 AM
  #175  
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Hope your Mum is ok dynamix.

Started on the tablets today Sara, just hopw the side effects are not too bad.

Best wishes to you both

Les
Old 11 April 2006, 10:34 AM
  #176  
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thanks Leslie

mum seemed to have a reaction to the morphine which was causing the nausia (spelling ) so they have changed the painkillers and hopefully that will work

decided to go on our little trip anyway - can always get a flight back if really needed
Old 13 April 2006, 12:05 PM
  #177  
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hows the side effects leslie? hope its not too bad mate

dynamix i didnt know your mum was on morphine, is she in that much pain?

mum has her last dose of radio today. she hasnt been too bad with it at all, but she is getting more pain than before. we are hopefully getting a second opinion next week. we know it wont change anything but it is one of those 'going through the motions' things that you feel better for doing
Old 14 April 2006, 02:45 PM
  #178  
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Hi Sara,

Had about 40 of the Horse Tablets so far and have not had any effects except feeling a bit tired so far. Keep thinking its saving it all up for later!

Best wishes to your and dynamix's mum's. Hope you have a great Easter.

Les
Old 15 April 2006, 10:40 AM
  #179  
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hi leslie

my mums radio has ended now and has been told she will be scanned in 6 weeks to see if there is any improvrment. mum wasnt too bad at all, she just felt a bit run down. she will have more surgery in 6 weeks to clear her airway again.

i would expect that you will feel ill soon, maybe it takes a while for the chemo to build up in your system, hope its not too unberable.

chin and pecker up
Old 19 April 2006, 02:48 PM
  #180  
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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?


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