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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:
RumourOfAHurricane · 17/08/2011 15:37

This reply has been deleted

Message withdrawn

Original poster
YellowDinosaur · 17/08/2011 16:07

Thanks for posting shineoncrazydiamond. It wasn't unhelpful either - sometimes just hearing that there IS nothing you can do is reassuring. I am a fixer and I hate feeling as though there is nothing I can do Sad

Sorry about your dad too Sad

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Original poster
YellowDinosaur · 18/08/2011 09:32

bump - anyone out there who can help?

OP posts:
Ilovedaintynuts · 18/08/2011 11:53

I have been working in this field for 10 years and I still don't know the answer to this Sad

I think focussing on the here and near and a making short-term goals is important but truthfully it is shitty having a life-limiting disease when you have small children.

I do know acceptance is critical. I have watched many mothers with metastatic breast cancer ruin (God, I sound callous) their last few weeks/months/years with their children by being totally consumed by thoughts of their eventual death.

Those who can live each moment (sounds cheesy) cope the best.

Also if you could encourage your friend to think about memory boxes or leaving things for her DS? I know from talking to the children of mothers who have died of breast cancer how immensely important this is.

In fact my DS has a friend who's mum I treated many years ago. I was chatting to him recently and he has all sorts of letters/memories that make her feel so real in his mind.

From a medical point of view there is every reason to optimistic about treatment. There has never been such an better time to have breast cancer. The treatment possibilities are immense and there are some studies that say some metastatic breast patients have better outcomes than both type II diabetics and heart disease patients.

Good luck X

Highlander · 18/08/2011 17:26

Depends on size of bony tumours, type of cancer etc etc?

SIL had a pre-menopausal DCIS that metastasised to her bones within a year. That was nearly 5 years ago.

She now has a couple of liver tumours as well, but her cancer is a slow-growing type and seems to respond very well to a mixture of hormone agents and chemotherapy.

Her oncologist has told her to adopt an attitude of living with a chronic disease. It will kill her, but her history suggests hoppefully not for a long time. She's in a good place right now. Last year was rocky, thinking that liver mets equated to an imminent death.

I think the uncertainty is awful. I don't know how she copes. She lives life to the full and makes a huge neffort to stay fit and healthy. She is adamant that a very healthy diet and lots of exercise helps.n and mountains of socialising....

Original poster
YellowDinosaur · 18/08/2011 21:31

Thanks both. Thats really helpful. Both in terms of it all sounding more positive than I thought and also ideas on how I might help her.

Really appreciate you taking the time to post your experiences x

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fivegomadindorset · 18/08/2011 21:39

A friend of my parents is terminally ill but still here although the docs are astounded, he lives by take each day as it comes and do things that you really want to do but have never got round to doing it as there is always tomorrow.

Could you maybe organise some trips out occasionally, not expensive ones and take a camera, photos for her DC when he is older will be important.

PonceyMcPonce · 18/08/2011 21:46

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Message withdrawn at poster's request.

tleaf · 19/08/2011 20:07

Advice we were given by the hospice was to include favourite perfume/aftershave in memory boxes, a tiny spray can evoke intense memories. Finacial advice included (1)having joint accounts ,as the money then usually transfers immediatiately to the remaining spouse etc without delay for probate. (2)Funeral plans that dont require medical history can be a good investment e.g. ASDA. Check as some only pay out after 2 years but others after 1 year and otherwise contributions may be refunded.(3)Claim DLA/Attendance Allowance and Carer's Allowance and consider applying for a Blue Badge.

midnightexpress · 19/08/2011 20:17

I don't have anything very useful to contribute, but just wanted to say that your friend is very lucky to have a friend like you, YellowDinosaur. I wish you and your friend all the very best.

SpeedyGonzalez · 19/08/2011 20:18

I'm in a similar position to you, YellowDinosaur, except that so far the prognosis is a bit better.

Just be there. And be the one friend who she can open up to about anything, no matter how scary. Your listening ears will be incredibly valuable to her.

Sad
Lilyloo · 19/08/2011 20:27

I think the best thing you can do is let your friend know if she wants to let off steam then you are there and will support her. But otherwise you can be there to do all the fun stuff you were doing. Someone who can be 'normal' around you when you are facing death is invaluable imo.
Also when the opportunity arrises a memory box is a great idea , something i would have valued greatly and sad at never having had the chance to get.
Am so sorry your friend is facing this

Original poster
YellowDinosaur · 20/08/2011 14:40

Thanks loads for all your helpful suggestions. Making me a bit teary reading through some of them actually but I guess thats to be expected Sad. Just wish I lived nearer to her but hopefully going to catch up with her after her next scan. Thanks again xxx

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Highlander · 21/08/2011 11:50

Try and be sensitive about the death timeline. SIL is terminal, but not going to die anytime soon. She was devastated when all 'friends' wanted to talk about was funerals, hospices, memorynboxes eg etc, yet she wanted to live normally. When she goes to the hospital or breast cancer support groups that's when she wants to chat about the grisly stuff. When she's with us, she'll fill us in on the cancer stuff, but mostly she wants to chat about life, who you would shag in Take That etc.......

Original poster
YellowDinosaur · 25/08/2011 07:53

Thats a fab tip Highlander. She was upset when she was in hospital having just been diagnosed with metastases and one of her friends brought in some photo albums and said 'I thought you might like to sort out these'. She felt as though this friend was writing her off as dead already.

I'd spoken to some people at work about practical support for her and they mentioned the memory box stuff among other things that she could do etc but I think I'll just tell her that I have spoken to people at work about the practical stuff and that I am happy to talk to her about it if she likes but that if she doesn't want to no worries.

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pinkstarlight · 25/08/2011 12:34

thats so unfair your friend has had a terrible shock the worst i should think is the not knowing what will happen,how can you come to terms with things if you have no clear answers.

im battling breast cancer right now from experience i found that once i was given an action plan i felt so much better,waiting for test results is hell and also the darkest time.

during my treatment i have met many people in my situation we all cope in different ways,for me i cant cope with everything being cancer focused and i cant bare to much sympathy or worse if people get upset it really drags me down.

i know its hard but just be there for your friend take her lead if she wants to talk about it thats fine,i know myself i want a good laugh and hear all the gossip,even listening to others problems takes my mind off my own
theres a great thread called the tamoxifen on here the support is fantastic

MidnightsChild · 25/08/2011 13:37

YellowDinosaur, I'm so sorry to hear about your friend's prognosis and understand how hard it must be to handle. My personal belief is that you take your lead from her ... if she wants to laugh - laugh with her, if she wants to cry - hug her, if she wants to plan for the end - help her with those plans.

I used the forums on the Breast Cancer Care website BCC and found them enormously helpful. The forums are for those with cancer and their family/friends. There's a special section for those with secondaries (where the cancer has spread from the breast) which may be of particular use to you.

The very best to you both.

paddyclamp · 25/08/2011 19:30

My mum got the same diagnosis as your friend in 1999...she lived till Oct 2007 and for most of the time she had a good quality of life

Original poster
YellowDinosaur · 25/08/2011 21:47

pinkstarlight and midnightschild ((((((hugs))))) and all the very best wishes coming to terms with hings yourselves AND beating the f*cking thing. Paddyclamp thats fantastic to know. I'm just keeping everything possible crossed for a good result on her scan.

Thanks so so much everyone for taking the time to poast. It really helps xxx

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paddyclamp · 25/08/2011 23:07

Even when my mum eventually died her medical team still hadn't given up treating her...these days so much is possible

Original poster
YellowDinosaur · 25/08/2011 23:28

SO sorry for the loss of your mum paddyclamp. Sitting next to mine on the sofa - going to go and give her a big hug. Thanks for sharing your reassuring words and really pleased that your mum had so long, and meaningful helathy time, after her diagnosis xxx

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SparkleRainbow · 26/08/2011 09:08

I am so sorry this is happening to your friend yellowdinosaur. I do not have much to offer, my situation is very different, my Dad died of cancer at the age of 59, as a result of secondaries to his liver, not properly identified or treated by the NHS, until too late. He was a fighter, and fought to the end, but he never came to terms with the fact he was going to die, I thought then, and I think now, he would have been happier at the end if he had been able to accept it on some level, whilst still fighting. I don't know if that makes any sense. I myself had a mass removed from my breast earlier this year, and so as a mum of three young dc I can empathise somewhat with the fears of leaving your dc behind. Also my ds has a lifethreatening condition, so everyday with him is wonderful and amazing. With all of this, I cope because I have to, I embrace life with my dc because I want to, and I try to push it all from my mind as much as possible to be as "normal" as possible because I need to.

I guess what I am saying is she will find a way to cope, supported by wonderful friends like you, by making memory boxes, and making memories with her dc, and by fighting this b. disease with all her strength. Sorry can not be of more support, I truely wish I could, but bless you for being so caring and thoughtful.

SpamMarie · 26/08/2011 19:38

One of the most important things is to not allow the person to feel isolated or abandoned. Don't smother them , obviously, but don't quietly disappear out of their life, just because you don't know what to say or do. That person doesn't expect you to know what to say or do in every situation, but they certainly don't want to feel any more alone than they already do. Even if it's just having a coffee and a chat, or doing odd jobs if necessary (or welcome), let them know they can always call.

A good friend of mine died aged 24 from cancer, a couple of years after diagnosis. So many former friends simply vanished. I don't blame them as they just didn't know how to react, especially at that young age, but I feel it added to his loneliness at a time when he could have done with some distractions. Just being there for your friend will be a huge help. (hugs)

SpeedyGonzalez · 26/08/2011 21:02

Excellent post, spam. It is so awful when people increase the emotional pain of somebody vulnerable so as to decrease their own feelings of awkwardness. Even at the tender age of 24 there are people who would stand alongside a friend in dire straits, and thank goodness for them.

sandripples · 27/08/2011 12:01

So sorry about your firend's disease, but she will value your friendship and support so much. Lots of helpful thoughts already given. I have had BC treatment too and am doing well I'm glad to say, so in a different situation. But I think you're absolutely right to take your cues from your friends - if she wants to gossip, chat, etc go with that. If she wants to watch crap TV be there too, when you can. I found even distant friends were a great support. One thing to watch out for is she might not want to have to update everyone separately all the time. It can help to have a link into a couple of circles of family/friends and those link people do the updating.It can become a strain having to speak/contact too many people if you're feeling rough.