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FormerMember over 16 years ago

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Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

moomy over 15 years ago

Hi, again, willowpoole, it does take a while to find your way around the site, but once done, it is surprisingly straightforward! I bet you'll find yourself helping others before you know where you are! We all join, wanting help and advice and many stay to give back! I certainly have, and hope to meet a few friends made along the way in person too! Your profile doesn't need to be long, but you do need a different part of your signing in bit to open it to view!

I'm so pleased you have taken that huge first step to getting some help together! well done! keep posting, we are great at finding folk again! I can usually be found on my own thread on the 'chat' side of the forum, or chatting to folk on the 'gentle banter and laughter' thread on 'chat' too, so do feel free to drop me a message on my thread there ( we all get good as well as bad news) If you find a thread you feel you want to find again, you can 'add it to my favourite discussions' where you sign in, you can then find it again! (But be warned, the site will soon be changing somewhat so we'll all probably be fumbling about! ) do keep posting! my love to you

Moomy

FormerMember over 15 years ago

Dear Keith,

I spent most of yesterday day sitting in one of London's many squares watching the world go by instead of doing some actual work. It was nice though to see people that were (seemingly) unaffected by sadness and who could really enjoy themselves. It made me really smile for the first time in a long time.

I've forgotton what normal sleep patterns are! My mum's taken over the cooking again and has disallowed junk food... which isn't bad apart from when I have a craving for toasted hot cross buns with chocolate spread.

Work is slow but I will do something today. I'm thinking bribes might work. In exchange for ten concise pages of notes - one ice-cream with flake, sprinkles and strawberry syrup!

Thank you and best wishes,

Jenny

FormerMember over 15 years ago

Hi all!

Can i just say how amazing this forum is! I have a bit of an odd story to put to you and would be interested for any feedback from anyone in a similar position.

My grandmother has bowel cancer - or at least we think she does! She has been very ill since the start of the year and the doctors have been concerned over her weight loss since late last year. Her Doctor has pretty much confirmed that with all symptoms (she has all the usual suspects, anemia, rectal bleeding, weight loss etc) that she has bowel cancer and has suggested that she have the necessary procedures to confirm the diagnosis - 'not likely' was Nanna's response! Bless her, at 26 i wouldn't much fancy the procedure, but at her age of 92 she is definately not game!

So, we think she has cancer but we dont know. Its so hard because we cant do anything for her. She has a pain patch, similar to a nicotine patch, that administers a small dose of morphine, she has been on these patches before to help ease her back pain through artheritis. We are lucky to have a very large family and four of my aunts are retired and visit Nanna every day and make sure that she is eating enough, that she's comfortable and they are also looking into hospice care for 'the start of the end'.

I think thats what has brought me online today and to the Macmillan website, I am so frightened of 'the start of the end' because how do you know when that is? What do you look out for? Will Nanna even present the same symptoms that you're supposed to with Cancer? Does she even have it?!

Has anyone else out there been in a situation like this? Where a loved one has been told that it is likely they have cancer but they haven't had the tests to confirm it? I mean, at 92 years of age, and at 6stone in weight, how much chemo could be administered anyway? Surely any aggressive treatment like that would kill her anyway?

I do hope that my post makes some kind of sense! Its so hard to have so many unanswered questions. The other big point and slightly odd factor in my story is that Nanna doesnt want any of us to know that she is this seriously ill. We all do know of course, but because Nanna has always been so fiercely independent she wants to retain her position as head of the family and doesnt want anyone to be worried or to fuss over her. She also wants to do it her way, she doesnt want to go into hospital for any period of time, she wants to be at home.

My aunts have looked into hospice care and of course her doctors know as much as we all do without anything being confirmed, so when necessary we can hopefully get the right pain relief for her and any additional help or care.

Wow - just to write all this down and get all my thoughts into some sort of order has made a big difference! I really hope you dont mind my posting and that i have posted in the right place - always hard to know!

Any thoughts or comments would be so gratefully appreciated. Good luck to all who are fighting it.

Liss xx

moomy over 15 years ago

Liss, what a wonderful person your Nan must be......my ideas really apart from making sure she is comfortable as she lives out her days, would be to get down some of the history of your family that she remembers! I bet she has some brilliant memories, which if you get down, will be a super record!

My love to you, and her too!

Moomy

FormerMember over 15 years ago

New to site - as have been tryiong to get as much info as I can. mum diagnosed about 4 weeks ago - no answers yet. radiotherapy assessment tomorrow. Lost weight, cough, chest infection, pneumonia, x-ray, scan, biopsy, hospice, home all in the space of 4 weeks - I think!! Is immobile from other conditions but found herself bedbound for 12 weeks, hardly talking, lots of sleep. Hospice wonderful - 10 days. I visited for three/four times and have had the most tranquil time with her and my dad. Time to talk, share, a very special place. I did not want her to leave but she so wanted to be at home - very stubborn even in her weak state. She now has a hospital bed, oxygen, nebuliser and all the drugs at home.I live a distance away - know all the M25 both ways now. These people who suffer are so brave yet so fragile and scared.

FormerMember over 15 years ago

Hello,

New to Share, been a member of What Now for several months but for some reason can't access the site without a proxy server at the moment. All other Macmillan sites are fine for me, just not that one, bit sad as the chatroom was a godsend.

Have filled out my profile, so anyone interested can go have a nose.....to cut a long story short I have a grade 3 anaplastic Oligodendroglioma brain tumour, 42 years old, married with 3 kids under 15.

Look forward to getting to know people on here and learning how to work another new site before they are merged LOL

Debs x

FormerMember over 15 years ago

Hi, Debs, and welcome to 'Share', although sorry that you neeed to be here.
I've tried reading your profile, but it's hidden - think you need to open it to all, if you're happy with that.
sue x

FormerMember over 15 years ago

Hi Moomy,

Thanks for your reply and kind words - i think thats an amazing idea thank you so much for thinking of it!

Nanna was around in the second world war and so has experienced a lot more than most in that respect and always has lots of stories to tell! Think it will be good for her to take her mind of everything to chat about things.

Thank you so much for the support - love to Caz!

Love and best thoughts to you all - its terrible for anyone to have to log onto this forum but what an amazing support network. xx

moomy over 15 years ago

Liss, I'm sure you'll be amazed at the stories she has to tell, and I bet it will cement the feelings of her being head of the family still! do keep posting!

Moomy

FormerMember over 15 years ago

New to all of this.

Just stumbled in here looking for support and an ear and have been humbled by everyones words.

I'm 31 and after an MRI to diagnose tendonitis in hips was quite abruptly informed I have a 10cm mass/cyst (who knows) in/on or around my right ovary (no sign of the ovary anymore), what a shock!!

Surgery scheduled for 18th July and I feel relatively calm.

CA125 normal, is this a good indicator for my age? Another question, has anyone experienced a change in there bowels, is this normal? I can't be too far from a toilet and eating makes it worse, that's when I feel like eating!

Any infomation on what others have experienced would be great.

Thanks so much for reading. xxx

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