jasey

They will tell you nearer the time - I think they try to find out who the "strongest" member of the family is and tell them. The MacMillan nurses will tell you if you ask them.

TBH I wouldn't ask them - It doesn't really help "Knowing" a timescale .

I know it's tough - but positive thinking is your best weapon.

Thinking of you.

Jase

dynamix

iTrader: (3)

sara

i asked macmillan - but to be honest it was a waste of time - they never know how exactly it will progress and exactly how quickly. They just tell you their best guess range and for me it was "could be weeks or could be months, but then again some have survived longer - over a year" - not much help

I am glad i asked though.

towser

My mother passed away from cancer 20 years ago, I was a daft 16 year old at the time. Nobody actually told me she had cancer - although I realised she was ill - that summer I took my usual summer job which implied staying away from home for the school summer holidays. 3 weeks later I was woken early to be told my mum had died. I've always resented the fact that I couldn't choose how I spent that time with my mother during that period and never got the chance to say so many things to her..... I feel so much for you and your's Sara, I hope that you can have enjoyable and precious time with your Mum - treasure every moment ( as I'm sure you are ) and keep your hopes and spirits up despite everything.

sarasquares

iTrader: (1)

thats awful

we need to tell my nan yet. she is suspecting things and i told my mum that her mum would want to be able to comfort her like any mum would

i am a need to know everything kind of person. reading between the lines is my job and i find i am doing it with this buisiness. i know its not healthy but i cant help it. i think once its in the lymphatic system its fairly quick. my motto is to think the worst then anything else is a bonus

i feel much better today. i spent most of yesterday blubbing and my nose is red now

jasey

Nan needs to be told ASAP - the shock will be tough on her - but not telling her will almost certainly be tougher in the end. .

sarasquares

iTrader: (1)

i know, i think i might have to do it. i have pulled myself together enough to do it. her doctor was going to drip-feed it to her but that is like prolonging the agony............bull by the horns time i think

what a fekin horrible thing to have to do

i will feel crap being the bearer of ****e news

jasey

I wont be easy - but it will be the best thing to do .

towser

Absolutely!! Certainly wish that I had been....

GE90

I know it is very difficult Sara, but yes, it is often normal not to get much of an idea about time scales, especially with a case such as your mothers.. Looking back, it is definately best that way, although it may not seem like it at the moment.

The truth is that, even the Oncologists do not know exactly how things will pan out.

There will be slightly worse and slightly better times.

Stay strong Sara,

In our thoughts.

Crazy Chick

Sara, I must apologise for taking so long to offer my words of encouragement. I do, in a way, know what you are going through. My grandfather was diagnosed with lung cancer several years ago and he was really completely ignorant as to what was going to happen to him, or so I thought. He used to sit there and tell me he was going to fight it but unbeknown to me it was already too far advanced and he died in his sleep only a few short months after being diagnosed.

I can't deny the fact that I don't really know the full effects this terrible illness has on the people who have it but I can only admire the way they cope with it so bravely.

I know you will really treasure the time you have left with your mother and everything you are planning to do with her to make her time left with you a "happy" time will hopefully give her, and you, that boost you both need.

My love and best wishes to you both.

xxxxxxx

Julz1983

You can't really give a time scale can you, just depends on the persons strength and how quickly the cancer will spread, my Dad worked up until Xmas Eve then by new years eve he was in hospital, didn't even know he was ill, after a few days of finding out my Mum and me were sat down in a room to be told how bad it actually was and how quick he would go down hill, 3 weeks in all, so not long, I would rather they had said a few months as he would have changed gradually and we would have had time, but in 3 weeks he went from being a big built person to nothing right infront of us. I know what you mean Sara by wanting to know all there is and it can't be healthy but I was the same I done nothing but try and fight for 3 weeks even though I knew from day 1 there was nothing could be done, I think it's just a way of coping.

STi wanna Subaru

iTrader: (1)

Sara, My mum had to tell her mum about my Auntie when she was terminal with a brain tumour. She tried to break it to her as gently as possible but my nan was not daft and had a good idea. It was very tough on my mum so I have a small idea how it will be for you. I wont give any advice on the best way to go about it. The news meant my nan was never the same after so I just hope you can give her the news so she can deal with it as well as possible.

My thoughts go out to you. Such a tough time for any family.

Leslie

SS,

Just got back from the oncologist. Apparently as you said the Avastin trial is only designed for treating advanced bowel cancer which has spread, or in my case, is only licensed in this country to see if tablet administered chemo + Avastin is more effective in preventing a recurrence.

They gave me a site address " cancerbacup.org" which is full of all kinds of helpful information.(no k in bacup) You may know about it already. I don't know the full address but Google will find it I'm sure. Their Freephone helpline no. is 0808 800 1234.

I hope that may be of help, i am sorry I could not find out any other information.

I should be starting chemo in about a week.

Best wishes to you both,

Les

sarasquares

iTrader: (1)

are they going to give you the Avastin then? Tarceva is another one but i cant remember what it does now

ive googled it already but the test results looked a bit worrying

medical science is moving so fast now its hard to keep up. no doubt in a few years things will have changed dramaticaly.

i hope your appointment was a good one and good luck for next week

Leslie

I have volunteered for the trial which is either tablets only or tablets + Avastin. They pick who does what on the computer with a random selection program. I should know whether I will be on Avastin today or tomorrow.

They say that the Avastin should improve my chances if I get selected.

Les

sarasquares

iTrader: (1)

i hope you get what you want leslie

my mum had a bad night. she was in a lot of pain in her back and chest and had to call the macmillon nurses this morning i dont know if this is the start of her decline, mum thinks it is

no one will tell us what to expect, they keep saying not to worry

Leslie

Sorry to hear your mum had a bad night, hope she feels better now.

Got a phone call to say the selection has excluded me from having the Avastin which is disappointing. The tablets are as good as the nornal chemo though they tell me.

It must be a worry when they dont say anything to you.

Hope it turns out alright.

Les

sarasquares

iTrader: (1)

sorry to hear about that never mind it was obviousley for the best

mum is a bit better today. she was so pale and weak, she couldnt walk properly yesterday. i thought it was the start of her going down hill. she has got different pain medication now......a week ago she didnt need any. the nurses have said she might be around for xmas, i assume that means that she prolly wont be

anyway she is much better today

jasey

This happened with my Brother - one day he couldn't get out of bed - the next day he looked fit enough to run a marathon - it's very to try and work out how it all works.

The nurses told us Stuart might see christmas too - they were right - but only just .

Take each day as it comes .

Lee247

Sara, sorry about you Mum having a bad night. Glad she is better today
I know its hard, but try to think positive, the same applies to you Leslie.
I really wish I could be more help, but I can only give you my love and best wishes
xx

sarasquares

iTrader: (1)

if you want to help lesley, you can take us all out for a round of drinks

had a good day today

eClaire

Sara, my family have been affected by cancer a LOT, one particular case was my grandfather who died from lung cancer. Although it hurts I CANNOT imagine what you are feeling right now, I don't know what I would do if it was my mum (touch wood). You are a strong person and are keeping your head together - just remember it is ok for strong people to cry at a time like this!

I can't offer any words that will make anyone feel better, but from more experience from losing people close to me because of cancer than I hate to tally up, all I can say is rather than thinking about and preparing yourself for the inevitable - make your remaining time something to remember, I don't think it is possible to prepare yourself for such a loss and may feel like time has been wasted.

And anyway, if she is anything like you she won't leave us with out a damn good fight

sarasquares

iTrader: (1)

i am a chip off the old block so yes my mum is a fighter claire

up until my mum got ill a few weeks ago there wasnt any family history of cancer. i am one of 4 sisters and we always thought one of us would stastically get breast cancer, this was furthest from our minds

every day is different, some good and some bad. i now take my phones to bed with me as i expect to get a call, its making me so worried. i wish i was living with my mum so i could be with her all the time. mum is still with my dad but he works all the time and has buried his head in the sand. mum wants to get her will sorted but he keeps telling her there is plenty of time to do it. i dont know what to do to make him realise just how ill my mum is

eClaire

It's amazing how quickly cancer can consume someone; even their personalities I have seen in some of my family members.

I would want her with me too. Its the mother in you - you just want to take care of her

My mother in law moved her mum and dad into her house when her dad was ill so she could help out caring for him; I do think its a good idea. It eases the pressure a whole lot more from what I gather. Hopefully your dad will come round soon. Surely your mum can start the ball rolling on her will without your dad? Maybe once its final and set in stone he may realise?

Once that sort of stuff is out the way it is time to enjoy and celebrate her life with her. My friends aunt had a small gathering before she passed away, just to think about the good times as she didn't want them doing it without her - she realised she had a good kick at the ball - she went to heaven one happy lady, I am sure There are so many things you can do to make the time you have left easier. Something like that may make your dad realise, too.

Leslie

Glad your mum had a good day Sara, thats very encouraging. Hope it keeps going like that.

Les

sarasquares

iTrader: (1)

we are very confused atm.
mum went for her radiotherapy plan today but it has left us with mixed emotions.
originally mum was told she would have the normal radio for 3 week periods at a time and it would improve her quality, not quantity but today she was told that she needs just one week of the radiotherapy and thats it, no more radio sessions

it makes me believe that mums cancer will not respond to the radio so its not worth bothering with...or if i believed in miracles i would be thinking that mums cancer is not that bad so she doesnt need much. i know the latter is not going to happen. the oncologist involved will not answer any questions and talks over you when you ask anything. i have previousley asked him about the trial drug Avastin and he went mad at me telling me that if there was something out there that would work he would know about it. he then went on to ask if i wanted my mum to be taking something so toxic and that it could kill her!!
i was stunned and nearly broke down because this man has no empathy. i know he is a specialist, as he keeps reminding us and thinks his 10 years of experience makes him superior to us

we are seeking a second opinion and wondered if anyone knows how much it would cost to see an Oncologist privately. we feel that we have got off on the wrong foot with this jerk and am worried he will not do the best for my mum.
i asked this guy if he could do a sketch so we could have a better idea where the tumour was in relation to her heart. he almost exploded and ranted on about how he has been doing this for 10 years and even he wouldnt be able to understand a diagram

we feel we cannot relate to this doctor and no matter how clever he says he is we wont be patronised by a chinese midget

if anyone can give me some info here it would help a lot. i would prefer to see an oncologist in London and would like to know how much it would cost. all mums previous tests and scans will be forwarded on to this private doctor so we we wouldnt have to have it all done again, i guess we need a consultation first....how do i do this?

sorry for having a rant, but i needed to

hope your chemo goes well Lesley, from what i remember it started yesteday...keep your pecker up

Julz1983

Hi Sara, sorry to hear of your crap time with your mum's specialist, I don't know if this is any help but if not it says he can refer people to see other specialists

http://www.chrisnutting-oncology.co.uk/

sarasquares

iTrader: (1)

thanks julz, i have just emailed him so hopefully i will get a reply soon

Diablo

Sarah,

I'm not going to dress this up, because its not my way.

My Father in law was diagnosed with lung cancer on the 22 February. He passed away 8 days later aged 64.

His tumour was near his heart, surrounded by major blood vessels and so was what they called non operative and non curative. Nicer than saying terminal, I guess.

Upon diagnosis the cancer specialist gave him three options. Chemo, Radio or do nothing. All that treatment was going to do was shrink the tumour (possibly) to reduce the symptoms (it was blocking the lower one third of his right lung) and improve his quality of life.

The doctor suggested he may have anything from days to months left. The day before he died, the consultant was painting a rosier picture. Its what they do - the last thing someone who is facing a prmature death wants to hear is that they may only have only days to live.

I haven't posted before now, because you've had plenty of support on this thread, but I don't want you having false hope.

Those in pallative cancer care do a fantastic job, and I take my hat off to them. But they always tend to look on the bright side. They have to for their own sake, let alone those directly involved.

I can fully appreciate your need to explore all avenues. But please, take some time to plan for the inevitable. Be truly aware that the worst could (and probably will) happen sooner rather than later.

And enjoy all the time you have together. Don't waste it chasing rainbows, no matter how hard it is to let go.

This probably isn't what you wanted to hear, but please don't waste what time you have left.

Feel free to PM me if you want.

Good luck, and all the best

edit to add, your existing consultant is probably frustrated - he knows the position, but, like many in the profession, cannot communicate it accurately.

2000TLondon

What an @rse! The last thing you need is confrontation with the doctor. Some of these peoples "bedside" manners can be horrendous.

Although it's not what you want to be doing right now, you don't have to tolerate that sort of hostility and he has a superior who will want to ensure he is treating you with respect. I'd say something like you may have got off to the wrong foot, but can he be more paitent with you as obviously you are all very traumitised and need things explained very clearly and calmly so you can all understand exactly what he is saying. Unfortuantely it will have to be you who backs down and is calm and submissive to his ego......

His experience and position counts for **** all if he can't communicate.

Unfortunately I know nothing about private oncologists.