dynamix

iTrader: (3)

great ideas sara - has to help

brendy

Sara - sorry to hear about your mother. To be honest you probably don't need any help to find a cancer specialist as your mother has already likely been seen by one. As someone who works as a consultant in the NHS I would honestly say when you are unwell with serious pathology you will be looked after well - others may disagree but thats life.
The results from investigations you describe do not sound ideal but it is worth having a talk with your mothers consultant to see if cure is an option or if symtom relief is the main aim.
Regarding American specialists many go down that route, spend large amounts of cash and end up with little real benefits.
If I sound pessimistict I apologise but ultimately quality rather than lenght of life is sometimes what should be aspired for. Given your mothers diagnosis she will also be referred to the Macillan nursing team for which I have the utmost repect - I wish you well and hope you have the time to tell your mother what really matters.

2000TLondon

Just like to add (as Leslie also said earlier) that positive thinking is a great, great assest in these situations. As I said, my mother-in-law was given six months and fought it for four years, and until the final few months you wouldn't have known she was unwell.

Although it is incredibly hard, have everyone think positive all of the time.

r32

http://www.usnews.com/usnews/health/...pecihqcanc.htm

Try that it lists in order the best US cancer hospitals, if the link doesnt work then I'm afraid you will need to type it out.
Hope everything goes well with your Mum. I know how it all is I have cancer for the second time, surgery didnt work, and I had radiotherapy at the end of last year. It isnt lung cancer mind. Give your Mum lots of support and dont fuss to much, keep us posted......
STEVE...........

sarasquares

iTrader: (1)

i hope you are managing to get to grips with your sad news, i feel that i am handling things better now, especially since i have read this thread. the majority of replies on this thread are positive and thats been a mahoosive benefit

i read this thread every day, thanks everyone, and my best wishes to those that are going through the same thing as me

jaytc2003

iTrader: (1)

Sorry to hear about your mum Sara, I experienced similar just over 6yrs ago with my mum.
Won't go into detail unless you want me to, but basically if nothing can be done, just spend as much quality time together with her that you can, do things like trips out etc, anything your mum has wanted to do, do it, worry about expense later.
Best wishes for you both and anyone else affected by it.

sarasquares

iTrader: (1)

thanks

it does seem that a lot of women get lung cancer

i have a question for anyone in the know.............

my mum had a biopsy about a month ago and since then her breathing has got very bad and she has gone down hill. i am sure i heard somewhere that sometimes that cancer cells can escape into other parts of the body when they are interfered with..is this a possibility?
mum is having an op on monday to freeze the tumour then a hole will be drilled through the middle so she can breethe more easily, i assume it is frozen to stop bleeding, but could it be so that they dont spread the tumour as well?

jaytc2003

iTrader: (1)

to be honest the biopsy is probably just coincidental, it has probably unfortunately just gotten worse in the lung since then.

Is it not possible for your mum to have the cancerous lung removed??

There may be some answers for you on this website

http://www.lungcanceronline.org/info/index.html

Didnt see the link posted before but was moved by what has been said and my own memories.

dynamix

iTrader: (3)

coming to terms with it now, just.

my mum is most probably not going to have chemo as not wanting quality of life to suffer through that and to enjoy what time she has left.

she is currently writing a wish list of things to do - that will be fun - dont get many Dolphins around Eastbourne. But it will give us all a way to make it as good as possible for her in whatever time she has and for us all to have time together. (hopefully)

freezing - think it is both to be honest but not sure on the spread side of things, but def for bleeding as the freezing thickens the blood.

Nick

Sara, I'm sorry to hear about your mum, I truly know what you are going though. My own experience with family support is Ovarian & Cervical cancer, so I can't be too specific for you.

This is my early advice, so you ar already past this. Whenever you visit the doctor or hospital, take a notebook. Take careful notes & look up things on the Internet. You will then be in a position to ask better questions. Check for Internet support groups, the newsgroup "alt.support.cancer" is a good start. I'm sure there will also be forums covering each cancer type.

You need support too. Also ensure that you keep eating properly.

Encourage your mum to discuss her fears, make sure that she has the level of support that SHE wants. There will be friends & aquaintances that handle the cancer in different ways. Some will seriously want to help & may not know how. The best way for them to help, is not to ask, but to simply do something. That could be helping you, anything for instance from picking up some milk, vacuum the house or even watering the garden. All this stuff truly helps & takes pressure off the family. At some point in the future, some friends may not be able to face the cancer & may actually avoid yourself or your mum, because they don't know what to say to you. Handle this before it happens by keeping things light with them, you will be able to judge with whom.

You already have a lot of good advice form this thread, I wrote a web site 10 years ago that my old ISP U-Net never closed after I moved:
http://www.personal.u-net.com/~njh/cancer.html it's probably full of broken links, but may have the odd bit of useful info. Has anyone given this link? http://www.cancerbacup.org.uk/Home

My best wishes to you, your mum & your family.

Nick

sarasquares

iTrader: (1)

jaytc, its in the middle of the chest below the airway so there is no option to remove a lung. i will look at the link later, ta

i agree with the decision not to have the chemo, it will make her very unwell and tired. we have now been told that her PET scan will take 7-10 working days then the results get sent back to the local hospital where she will get an appointment to discuss treatment if its an option. this seems like a very long winded way, but i spose its the same for everyone

we might be planning a trip to Kenya if she is well enough. we have started the wish list
i am glad to hear you are bearing up. you will go back down again, bit like a yoyo

i might be nice to hear about wish list suggestions, and i am stuck for a mothers day special pressie, bearing it in mind it will prolly be our last, any ideas?

jasey

"mothers day special pressie"

Get her a nice portrait of you in a nice dress.

Most Mums love to see their daughters in dresses







Me - I'll have one of you in yer boots

sarasquares

iTrader: (1)

lol,

Drunken Bungle Whore

How about a scrap book of your life together - all the things you did that meant so much. Lots of focus on all the fun you've had and how much you love her - something you can look through together and have a good laugh at - the more embarassing photos the better. This would serve 2 purposes - firstly it will be fun to do and remind your mum what a great life she's had and secondly, should the very worst ever happen, you'll have great memories of going through the book together and you'll have great things to remember her by.

sarasquares

iTrader: (1)

thats a good idea, i just hope it never gets published

i spose we are lucky these days what with video etc, i feel some home movies coming on

a visual record must be one of the most important things to have

jasey

Maybe you could try and get a family get together to celebrate her life. One of the Things My Mum said (a Number of times) during the weekend of my brother's funeral was that he would have loved to be involved in the various gatherings of old friends etc.

The Logistics of getting extended families together could be problematic but it's maybe worth a go ?

Jase

sarasquares

iTrader: (1)

there are 3 lots of 18th birthdays in the summer, we have already decided we will use each one as an excuse to get the whole family together. i hate family parties, someone always shows themselves up (me)

chrome

That's awful news for you all Sara

I would have posted earlier, but it would have been a duplicate of little gine's post tbh.. same links. doh.

The Macmillan people are meant to be superb btw...

Unlike lung cancer; my old man had throat cancer- twice.
He survived (only just) he has no voicebox now mind!!- he speaks like NED from south park! (electronic box), and the poor sod had a stroke immediately after the larynx removal surgery

Cancer may not kill *everytime*, but it sure is a nasty peice of work.. without the cancer my old man would still enjoy life.
He often wishes he had never survived as his quality of life is so drastically reduced.

I know if it was me in the situation of having a terminal illness; I would want to enjoy the time I had left, rather than worry over a possible 'cure' that may or not accelerate my demise in the process...
Just my2p, not intended to sound nasty or cold.

I wish I could sound more positive. sorry

My thoughts go out to you all.
Brad.

r32

Get her to try all the available 'cures' the folk I met in radiotherapy who had already had the chemo didnt seem to feel it was so bad. There are new drugs available that dont leave the patient feeling so bad and in alot of cases they dont even lose their hair. I have some tests in April but if I have to go for chemo as well then I will. I'd like to last as long as possible. Please dont rule any treatments out. Keep going fight the damn thing as long as you both feel able.
Good luck, my thoughts and prayers are with you and your family.........
STEVE........

sarasquares

iTrader: (1)

thanks you lot, i am deffo looking at all the info you are giving me, its a big help

dynamix

iTrader: (3)

sara

family video it is for us

my sister has twins due next month and my mum is upset because they will never know her so we will be putting together a family video to show her at her looniest best so that they can at least appreciate her finest points in the future when they are ready.

Energy food bars also seem to be high on the list for her - ones that are good for you rather than just pure sugar. Luckily through my business we stock a great brand that has some magic ingredients to aid recovery - will report back on whether they have any positive impact or at least give her the energy to get out and do the things that are on her wish list.

Treatments are developing all the time and there are always trials going on - next step for us to to try and get her on one - we will not give up so long as there is some hope, but balancing quality versus longeivity is key for all of us.

Situation the rollercoaster: on an up slope but still guilty for any kind of thought that involves post-mum life.

sarasquares

iTrader: (1)

we are going to do a video diary and a scrap book of pics. mum has been getting steadily worse over the last week, she is finding it really painfull to lie down, she is in a lot of pain now. we dont know if she is deteriating(sp) or just going through a bad patch. she is having a lot of difficulty breathing. she has an op on monday to clear her airways, i am hoping and praying this is what is causing her pain

i was starting feeling complaicent(sp) about the whole thing, i cant even afford that now...time is so precious


it looks like you are being positive i am one miniut then not the next. i mentioned to her doctor about a trial drug that had been licensed Tarceva but he said that her specialist would know all about that. i am not so sure cos nothing has been mentioned so far and time is very important. who do i ask about it?

Julz1983

Hi Sara, you already know what my situation was a couple of years ago, to find out about certain medications etc go to the doctor and really push for answers, thats what we had to do as if you don't go and push towards something and ask for it yourself then it sometimes feels that doctors etc are just sitting back and not bothering, thats what it was like in our case anyways, before someone says that doctors don't sit back, I'm on about our situation, I know others are different in different areas. I hope all goes well for your mum on Monday. Just a thought but have you searched for any forums that deal with cancers and the different treatments and meds available, as there might be information on that would help you and your mum.

Turbohot

Sara, didn't want to tell you the details but as you know,my father died of lung cancer 4yrs ago.
2 years prior to that,he was diagnosed with Diabetes.he was under the regular health checks with his Dibetic status but his cancer never was caught.One day he complained about having difficulty in eating and he coud not swallow.In next two days he could not drink either.Within those four days,he complained about the back ache on his right side.Then on 5th day he could not even speak due to the blisters in his mouth.With no food and liquid intake problem,on 5th day he was admitted in the hospital.He was so full of life even there.he walked fine and tried to communicate with the medical staff with sign language etc.But there they did scan on him and found he had full blown lung cancer.His scan showed that his right lung was gone and the left had was about .50 p size perfect He dramatically deteriorated in hospital with a day or two.He was in tremendous pain and was induced Diamorphine etc.He eventually went into Coma and left us all.
Mind,his cancer was at advanced stage.he had lost weight in last two years prior to his death but doctors thought it was due to Diabetes.Although he was a solid smoker at 60 cigs a day for more than past 30 yrs, doctors did not suspect anything else.
he was 65.
Don't be scared to hear this story,Sara.His cancer was advanced and he did smoke like a chimney.His Diabetes did not help either.The saddest thing is,I was not around him.My rest of the family were.Me and my children hadn't seen him for 9 yrs prior to that.He passed away missing us............
At least you are near to your mum.You will find the best care and physically support her.
All the best and hope you find a good specialist for her.

Leslie

I hear that Chemo is far more advanced and effective these days. Maybe it would be worth considering accepting it, it is surprising what has been cured with it.

I am certainly going to do it anyway.

My very best wishes whatever she does anyway.

Les

sarasquares

iTrader: (1)

ahhhhhhhh **** swatti, i didnt know it had been that bad

my mum has last stage lung cancer so i know there is not long

Leslie...chemo isnt an option at all, just radiotherapy if we are lucky.

the tumour cant be removed unless it is [b]completely 100% and they are not able to do it. their answar is that she has the best advise. i cant settle for that..........there MUST be someone out there that would have the expertise to do it, money isnt an option, its just finding someone, thats the problem

Julz1983

I don't know if this site will be useful to you, it is about the drug you mentioned before, so you have probably already read up on things, but there might be some extra info for you.

http://www.tarceva.com/tarceva/patient/index.jsp

The other sites are just for info etc on lung cancers

http://www.ontumor.com/lung/index.htm

http://www.cancersociety.com/lung_tp.cfm

http://www.cancerhelp.org.uk/

sarasquares

iTrader: (1)

cheers, one of those was very interesting,. i'd never heard of the treatments

dynamix

iTrader: (3)

been reading a lot about Ensure Plus and ProSure drinks - has anyone any experience with these?

Either where to buy or whether GP will prescribe them?

My Mum is losing loads of weight and desperately needs to intake calories/energy and nutrients - thinking these will keep it in check.

2000TLondon

You may be able to get those drinks through McMillan, I belive. If not GP should prescribe.