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Original poster

How to cope with a terminal diagnosis

39 replies

YellowDinosaur · 17/08/2011 15:26

Hi all. not sure if this is the right place to post this - I know there is a life limiting illnesses section but there are only 3 threads there so thought there may be more people here who could help.

My best friend was diagnosed with breast cancer 11 years ago when she was only in her 20s. After surgery radiotherapy chemotherapy and tamoxifen she was all clear. Sadly though the cancer has come back in her bones a couple of months ago. She has had surgery and is taking medication and wil hopefully avoid chemo at the moment although she is due to have another scan next month to see how she has responded. Her consultant is very positive and has said that as long as she is responding she is liking to have several years of being relatively well, although thats not entirely predictable.

The thing that she is most struggling with is the unpredictable nature of this which I guess the scan results, good or bad, may help. However the other thing is the fact that she has a 1 year old child. Even in a best case scenario of several years it is likely that he will still be small when it catches up with her Sad. And I find it really difficult to know how to support her because, frankly, it is fcking sht isn't it and there isn't anything to make it better AngrySad.

Or is there? If there is anyone out there who has any experience of this I'd be very grateful for your advice as to how I can best support her during this. I am not expecting to make it better over night or anything unrealistic but it would be good to hear (while accepting that its personal and everyone is different) what helped and also what didn't. Especially things that helped you really come to terms with such a terrible diagnosis and enabled you to move forward and enjoy the time you have. I don't honestly know if that is possible but if there is anything that I can do to help her to get there I'd love to know.

At the moment I'm trying to just be there, and to listen, and to take cues from her but this is less easy than it might be as I live a fair distance from her.

To avoid stealth posting its relevant to tell you that I work in a related field so have a reasonable amount of knowledge of treatments and prognosis in breast cancer but I am more involved in the initial treatment and not so much in the psychological aspects.

OP posts:
Lizcat · 27/08/2011 16:58

Yellowdinosaur a friend of mine from Uni is a not dis-similar position she has bowel cancer found at colonic resection after years of chrons disease. She had chemo last year and went into remission, but earlier this year the evilness came back and she is now having as she puts it the "kick ass" chemo drugs which are currently controlling her cancer, but her chances of cure are slim at best.
She has an incredible positive mental attitude and is living life for the day- the other week she saw Bon Jovi, Take That and Glee all in one week. She is writing a blog which whilst I would prefer not to put the address on this forum I am more than happy to provide you with the address of if you pm me.
Through this blog and facebook all of us, from the 4 corners of the earth literally, are keeping in touch with her providing love and support.
She is an inspiration to us all and is waiting for the day which she can use the teeny weeny babies that she has had frozen before the chemo killed her ovaries.

Original poster
YellowDinosaur · 28/08/2011 21:33

Thanks lovely ladies for your advice and support. It really means a lot.

Sorry about your Dad sparklerainbow and your friends spammarie and lizcat Sad. Glad to hear things are going well for you sandripples Smile

lizcat I will pm you for the blog details thankyou x

OP posts:
Jools0812 · 31/08/2011 09:55

YellowDinosaur, I am just marking my place on this and will come back to you. I have exactly the same diagnose as your friend although my bone cancer was discovered when I went for my first chemo session for my breast cancer. It looks like it had been hiding for ages but I didn't notice any symptoms until I found my breast lump. That was 2007. At the time I had a son in infant school but I was told that what I had was terminal.
Well I'm still here! 4 years later and my son is going to senior school -something I thought i would never see!. The bone cancer has remained stable (its in my left hip only) although last year I had to have a hip replacement. Last month I was told it had spread to my knee so sorting out further treatment. On my way out for the day (DM waiting and tapping her foot as I type plus three excited children jumping up and down!)but I will post again if you think it would help or feel free to PM me any time. I'd love your friends blog address...I have one too although I have not posted on it for a while as it wasn't helping me. I would say that cancer really made me realise who my true friends were and I really appreciated the support they gave. She is lucky to have you xxxx

Original poster
YellowDinosaur · 31/08/2011 22:14

Thanks Jools for such an amazing post. I have sent you a pm... Wishing you all the very best for your forthcoming treatment. Thinking of you and your family xxx

OP posts:
banana87 · 31/08/2011 22:26

I have no advice, and I cannot even begin to imagine life in your friends shoes :(

My friend had breast cancer and went into remission as well. It also came back in her bones BUT she lived a fair few years longer before it eventually spread to her liver :( She was involved in LOTS of clinical trials through the Marsden though so hopefully things will advance over the next few years and your friend will have another 20 or more to go :)

Iamseeingstars · 31/08/2011 22:39

I am going through this myself at the moment and I am really struggling. I keep being told my condition is life threatening and I will die within a year, but it seems unreal.

I am sick of people constantly asking me what is happening, what news have I got, will I get better, etc. I dont know the answers, I am not getting much info from doctors because they are still investigating what if anything they can do.

At the beginning when the news got out I had lots of visitors and offers of support, but as time has passed these have all dwindled and I feel very much on my own and very very lonely.

Being in hospital has also really frightened me, seeing what happens to people with cancer. It is really scary and I hate the idea that that will be me in the coming months.

It is hard to advise what to do, but including people with illnesses is really important. Everyone has assumed I will say no to everything now because I am not fit enough so they have stopped inviting me. Exclusion is really heart breaking. I need to enjoy the last year or so of my life living, and not worrying about what will happen tomorrow.

Peachy · 31/08/2011 22:53

Iamseeingstars hugs. On the vague off chance you are in S E Wales I would gladly sneak you some cake into the hospital and visit. It's sad that peple are assuming how you would like to spend your time.

Which of course is a big key when supporting someone whether with cancer or any other issue: ask the person how you can help.

I've two pieces of advice OP, firstly if your friend ahs not got a Macmillan Nurse ask her to consider it: theyc an form long term relationshoips and whilst people are somewhat understandably scared of another sign of their diagnosis, they are not suppose to be like that at all, theya re supposed to being positive aspects to someone and help tehm enjoy life and support teh family.

Also as she has a child under one a homestart volunteer mighht be good, I used to work for them and we had a few placed in homes where one parents was terminally illl, and they were there for support but also the practical stuff: watching teh child whilst Mum and Dad snuck off for a coffee, somene to help wityh chores when tehre were better things for parents and child to spend their energy on- like creating meoties. Homestart volunteers are not tehre fore hosework but each contract is negotiated and your friend might find it something that helps.

Iamseeingstars · 31/08/2011 23:07

Thank you Peachy.

I read on a posting on MN that when you get a diagnosis you find out who your true friends are. This has been so true. Those people I expected to be around havent been, and people who I considered to be acquantainances have been the ones who have been supportive and helpful.

I would like that if I rang someone asking for help, or to go for a walk, or anywhere, that they didnt say they were too busy with their own social life, but to realise that if I have rung, then it is a cry for help and support and that I do really need them and would hope that they would fit me in to their busy schedule.

Peachy · 31/08/2011 23:11

Really? they do that? I believe you but it's still- well I wish I did not.

Is there anything we on MN could do to help you feel less isolated?

Iamseeingstars · 31/08/2011 23:27

Thanks Peachy, but no. I am starting to open a bit on here, but it is actually the physical stuff I need support with.
When I get out of hospital, which should be soon now, I need people to make me go for walks, get out, and do things and not accept no as my easy option to get away with not doing anything. Unless I get physically fitter then my health will deteriorate much quicker but I need help and pushing.

Peachy · 01/09/2011 00:03

That makes sense. Do you ahve the sort of mates you can say Oi this is what I need to? I know I could some of mind and that can be a godsend.

Original poster
YellowDinosaur · 04/09/2011 15:09

Peachy thanks for your practical advice - much appreciated.

Iamseeingstars (((((((hugs)))))))) So so sorry you are going through this too Sad and also that you are not getting the support you need from your friends Sad. Is there anything we can do on here for you? I can't imagine much worse that going through this but being in the situation where you don't have the support you need is truely shite. Thinking of you and hope things improve soon xxx

OP posts:
ChippingIn · 04/09/2011 15:25

Iamseeingstars - have just sent you a PM - friend not foe :) (I know some people freak out about getting a PM).

To everyone else please take a Wine BiscuitBrew or HUG, whatever you'd like (you too Stars!).

YD - It's awful to think of your friend going through this and it's so much worse when the person has a small child. Life is shit sometimes :( I think you are going to help her through this enormously. Just be you and be there for her as much as you can possibly be. Try to get to physically be with her as much as you can - lots of other stuff will keep. It can be hard to know what the right thing is to say or do, but anything is better than nothing x

Jools0812 · 04/02/2012 17:21

Yellow Dinosaur
Just wondered how your friend is?
Iamseeingstars -I can't agree more you certainly find out who your true friends are
Just found out mine has now spread to my calf bone which is worrying. It seems to be making its way down my left leg...my ds jokes that i am getting so much radiation on that leg that I will be the bionic woman one day..bless him

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