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Cancer chat line

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ProfilePosted byOptionsPost Date

SylviaInCanada

SylviaInCanada Report 16 Jun 2010 22:11

Thanks Puss


Glad to hear that your mum and stepdad are adjusting to the new reality. Fingers crossed for Thursday



I opted not to have a reconstruction ...... I decided that the operation as described to me was horrendous! Plus it is counted as cosmetic surgery here .... so we would have had to pay for the whole cost.

I do wear a prosthesis, and forget for much of the day that I only have one real booby.






May I add one other thing



Always take someone else with you to all medical appointments. Ask them to make notes of everything as it is being said ........ and to take a list of questions to remind you of what you should be asking.


It's an overwhelming experience, and you can and will forget a lot of what has been said if you are alone and/or just listen to the doctor



I went as the supporter for an elderly friend in 1997 ........ she was told at the appointemnt that she had liver cancer, probable 2 years left.

She gave the notes that I'd made to other friends who visited her so she didn't have to keep talking about it.


In fact, she either gave up, or it moved much faster than expected, but she died within 6 weeks.

Her situation wasn't helped by the fact that she had an alcoholic husband ........... the cancer did help her to acknowledge that fact and admit it publicly, but he was b****y useless!

I became the support as far as the hospital was concerned, I was the one called in at midnight because they thought she was in the last stages ................ and I was the one they contacted 1 week later to see if she should have an autopsy done when she did eventually die.

Her husband later went around telling everyone how P had died, he was right there, etc etc .................. the hospital phoned me because they hadn't seen him in 2 or 3 days!



I still get angry at him for all that happened during that few weeks, even though he's now been dead about 4 years! He was driving to the hospital drunk, refusing to leave her alone, fighting with security ....... I can appreciate that a guy who's been pickled for 40 years has problems when his mainstay is gone, but ..........................................





sorry





sylvia

Ladylol Pusser Cat

Ladylol Pusser Cat Report 17 Jun 2010 10:01

that was so good of you sylvia a true friend xxx
yes re take people in at appointments my mum cant cope and goes to peices so the 3 of us go in, i find im asking the questions from which ive learnt to ask like prognosis etc , i just hope mum dont squeeze my hand to much today i stupidly clipped the hedge last nite cause i felt of now im one finger tapping on the keyboard lol.

sylvia you dont appologise you have every reason to be angry, you think loosing his prop would have stopped him bless her she is in a better plce with those that love her xxxx

Ladylol Pusser Cat

Ladylol Pusser Cat Report 17 Jun 2010 16:52

Hoping for someone to intepret what im say ....Sdad had his lymph nodes removed as a precaution in his groin due to wear his cancer was, it turns out 1 of them is infected, doctor cant give a prognosis at this time, radiotherarpy is going to be given at a different hospital, ive just read radiotherapy is not a cure but slows down the progress am i right very confused at moment, on the scan where they inject the dye no other cancer showed up thanks xxxx

Jean (Monmouth)

Jean (Monmouth) Report 17 Jun 2010 17:21

Puss, the lymph node may have been positive but may not have spread and they are doing the treatment as a backup. I had all my lymph nodes under my left arm removed, but they were all clear. I still had to go on Tamoxifen for a couple of years. I was tried on something else I cant remember the name of, and it made me feel ill so I refused to take it, knowing that Tamoxifen was tried and tested. That was 2002. Just had another mammogram and see the specialist on the 2nd July.

Ladylol Pusser Cat

Ladylol Pusser Cat Report 17 Jun 2010 18:27

hi jean when i asked was the cancer still classed as stage 1 he said no it has spread so im presuming he meant just to that lymph node and radioptherapy on that basis im sure its going to be ok as it had only spread to one and i guess radio would be to zap any rougue cells xx

on checking its given around a 60% survival rate but says with it being such a rare cancer its hard to predict so now time to remain positive as the parents didnt understand what was said im selfishly keeping it to myself

i asked the prognosis and stage thinking they would understand i also commeneted on a word metatases which i looked up and he confirmed that none had been found meaning cancer in his other parts, at the end of the consultation they seemed so happy i couldnt burst there bubble, but in saying that when they see the main man after radiotherapy he will tell them any different, you may think im being selfish but they have a holiday booked and i want them to take it happy there is enough time to worry , or am i being unfair never been in this situation before xx

SylviaInCanada

SylviaInCanada Report 17 Jun 2010 19:56

Puss


you are being very kind and caring


This is personal experience


OH's father had colon cancer back in about 1983. It was well advanced when it was found because of a blockage in the cancer.

His mother didn't want OH to go back to England, phoned us with the diagnosis and what had been said after the op ........they've got it all, everything's fine, he'll have to learn to live with a bag but so does the Queen Mum so he'll be fine, back to normal, etc.

Then they released Dad with a colostomy bag ............ and no instructions to Mum how to handle it (or so she claimed).

She phoned here in absolute panic the next morning. OH was on the next plane to England.

While there he insisted on seeing the specialist ........... these were still the days when UK consultants considered themselves little gods. And this guy at first refused to see OH as he wasn't the "spouse"

After a tirade from OH, especially regarding the fact that it takes a minimum fo 24 horus from here to organise a flight and get back ........ the consultant agreed to see him

It turned out that they had not managed to remove all the cancer, they knew it was going to spread, but they (ie, the doctors) had opted not to recommend any further treatment because of Dad's age (73), and the fact that chemo and radiation is hard on the body ..................... they decided that the operation alone would give a quality of life for about 12 months and then the spread would have occurred. This was weighed against about 12 months of bad quality of life while he was treated.

Mum and Dad were both pharmacists, well educated, etc ...... but they either unconciously or wilfully did not hear most of what had been told them

Basically, Dad had been given 12 months to live ................... but they had an enjoyable 12 months during which Dad got back to some of his normal retirement activities, including a celebration for their 50 years as members of the Pharmacist association


Just over 12 months later, the cancer had spread to the liver, and Dad died peacefully only a few days after the doc had realised that Dad was failing. OH's sister (who also lives in Canada) was back visiting them when she realised what was happening.

We were actually chased by CHiPs, the California Highway Patrol, to get the message to us that Dad was in the last stages .......... it all happened that fast at the end. It took us 2 days to get back here, then OH flew out the next day, his Dad died the day after.



I think that was better for them than facing the truth.




so, yes, I do htink you are doing the right thing



Just be sure that YOU talk to someone, either us on here, a close friend, or a counsellor, to help YOU keep on an even keel in case the worst does happen



But I think the fact that they are considering radiation is a pretty good sign.




sylvia
xxxxxx

Ladylol Pusser Cat

Ladylol Pusser Cat Report 17 Jun 2010 21:02

Sylvia thankyou so much and thankyou for letting me off load as well as listen i cant tell anyone else i dont trust them to let the cat out of the bag i am not confident he will be ok as from the start ive had a bad feeling about this but i will pray so hard for him, ive informed our local council of the situation as they live in another town that my mum may need a bungalow near me and specky but only to speak to me , they have talked of moving closer but mums mum and dad are still alive and she cares for them so they wont at the moment, i so want there time to be good if im wrong nothing is lost they have each other and a home if im write we can look after mum here but at 62 she is fit as a fiddle and the odds are in his favour thanks again xxxx

SylviaInCanada

SylviaInCanada Report 17 Jun 2010 21:09

you're welcome


any time
xxxxx

Ladylol Pusser Cat

Ladylol Pusser Cat Report 18 Jun 2010 19:17

hi everyone how are you doing, spoke to dad earlier him and specky are of to preston tomorrow to pick up a awning getting out will do him good, mind you specky is a good driver but a little fast for dad he calls it a white knuckle ride... he dont speed if anything dad drives to slow xx

Sylvia

Sylvia Report 18 Jun 2010 23:08

Hi Puss, so pleased your dad is getting out, as you say it will do him good. hope the weather is good and he enjoys his white knuckle ride lol bless him x

Annie from NZ

Annie from NZ Report 19 Jun 2010 09:18

Well I went to the dietician. What a waste of time. I went there expecting to be told what things I should stay away from, what I should be having more of etc. All she could tell me that what I am having in the way of food and drink at the moment is fine and that there wasn't much that she would change. Just told me to try and cut back on sugar and to make sure I am checking lables on foods etc and choose the healther options. She didn't even know anything at all about my medication and the side effects etc, she had to look it up in a book while I was sitting there, also she had the nerve to answer calls and keep me waiting whilst sitting in the consult room. She was a sour b***h, looked like she sucked on a lemon.


Having a down day today. Just had argument with OH. Don't know what to do now. Am so upset.

Reece

Reece Report 19 Jun 2010 10:34

Annie dear, I am sorry that you had such a rotten time with the dietician - please forget her for now, especially as she was so rude. Don't go near her again whatever you do. I'm sorry that you're feeling so upset but isn't that understandable?

How about eating just whatever you fancy this weekend - give your OH a big hug and ask him to help you sort out something to eat that you can all enjoy.

I haven't been able to read all the messages yet but I'm wondering if you have any relatives or friends nearby who could help you, even if they only lend a sympathetic ear and listen. I don't have any relatives here (I'm from Oz) and when my son and my OH first developed cancer (different ones) I had to concentrate really hard on just getting through the days and nights especially for them. It is incredibly hard for you but for OH, too - forget about the arguments - they happen and they go away, too.

I wish you better days to come and send warm love and hugs from London.

Reecexxx

Ladylol Pusser Cat

Ladylol Pusser Cat Report 19 Jun 2010 17:11

Annie i totaly agree with reece some people have the understanding of a rock you have enough to contend wit6h you know what you can eat and what suits you, you dont in opinion need these people who have no idea how your feeling.

A lady doctor in out practice is morbidly fat you never hear her going on about diets.

SylviaInCanada

SylviaInCanada Report 20 Jun 2010 04:57

OH had to have a chat with a dietitian after he'd had the colon cancer


he came home laughing about it


she'd gone through his diet with him, how much he drank etc etc


all she finally said was "perhaps you could cut down on the drinking"



at that time he was having one, at most two, drink a WEEK


Over the last year, which is about 5 years after that useless interview, he has found that ONE small glass of port, sherry or whisky just before bedtime helps him sleep ......... so he has about 6 drinks a week



I give him a hard time about it ..... but it really isn't a lot is it???



Forget it, Annie


The important thing is that she found nothing wrong with what you are eating ....................... so you are doing it right.



sylvia
xxx

Florence61

Florence61 Report 20 Jun 2010 16:33

annie, i have just come on here after no reading for a day or two so catching up. my own daughter had a very rare and nasty cancer when she was 5. she will be 13 in sept. what i remember about her diet is this, when she was on the high dose chemo, her neutrofils were zero for 7 weeks and confined to a room with double doors for protection from infection.

she was not aloud to eat any fast foods such as chips, pizzas fish suppers etc. mainly because they were cooked outside the hospital and easily would contain some germs which she couldnt fight off as she was weak.

when she ate bananas she said they tasted of cardboard and other foods
too. the doctors said the chemo distorted the taste of some foods and she wouldnt eat those.

her mouth broke down eventually with horrible ulcers and she wouldnt eat anything for two weeks. she had a permanent food drip to keep her weight stable.

anyway once she improved and was allowed to eat whatever, we didnt care if she put weight on, to have her here and get better was more importnat. now she is a healthy 91/2 stone and consultant always says she is too heavy and i always remind him when she werighed only 2 stone!!! i know which i preferred. so eat whatever makes you happy and try not to get too upset abput the weight, it really doesnt matter to anyone else how you are its noone elses business.

i am astmatic and for two years was on steroids and now am 2 stone heavier. but i am stable now andreally dont cARE ABOUT MY WEIGHT SO MUCH as i use to..
i will send you some positive thoughts and a big hug to make you feel better
chin up
love florence

Sandra

Sandra Report 20 Jun 2010 19:17

Hi my aunt 89 and 20 years ago she got cancer then 10 years later she got it back but she is with us and going strong and enjoying life

Ladylol Pusser Cat

Ladylol Pusser Cat Report 20 Jun 2010 19:43

BRILLIANT NEWS SANDRA THANKS XX

Ladylol Pusser Cat

Ladylol Pusser Cat Report 20 Jun 2010 19:47

sylvia and florence youve said it size is of no significance unless your immediate health depends on it at 67 and 16 stone my step dad was still climbing on the roof to sort the ariel out and washing the top of his caravan by standing on the top, he has a soft landing now neighbour has some fast growing conifers lol xx

Ladylol Pusser Cat

Ladylol Pusser Cat Report 22 Jun 2010 09:16

Really worried about dad he keeps putting himself back to bed saying he is dying and he dosnt care what anyone says or does anymore he is seeing no more doctors or hospitals, i wondering if this is a normal reaction, i know im not in the same boat but sometimes when pain has got me down i feel like doing that.
ive told him if he is giving up he will die anyaway being negative will play havoc on his immune system.
Hello everyone xx

Florence61

Florence61 Report 22 Jun 2010 16:47

hi puss sorry to hear about step dad, he really must be very down to say the things he is. do you have an outreach nurse or councillor that you can speak to. they may be able to reassure you that actually it may be quite normal for him to feel the way he does. i agree though being negative has a terrible effect on the immune system and the body will react to this.

is there anything he likes doing or going to that would divert his attention even if its for only a short time. when you are ill and in pain and indoors, you have all this time to dwell and therefore feel constant pain and have negative thoughts. if there is anyway you can get him out of the house even for just an hour, it will divert his thoughts to something else and he will then become more positive.

i know its not a cure as such, but would relieve the worry from those around him and he will feel better in himself.

of course its easier said than done, especially if he is stubborn and strongwilled, but that i dont know.

hope things improve puss, thinking of you and the family
florencex