tell me everything about helping a friend with (I can't type it)

[Mitchy1nge]

with a rare and aggressive sort of cancer

so far I know that crying is not especially helpful but there must be things I CAN do?

Huge hug for you. Be there to listen. Ask if they need some cooking/washing/cleaning going as this will help. Do they need help going to appointments etc? Help looking after their children?

she hasn't even had any children yet (argh fresh wave of tears) but I did offer to tidy up which at least made her laugh (I have an entourage for all domestic stuff at my house)

her mum has banned me from the hospital and would like me to be around for the non scary stuff, a holiday and nice distractions that sort of thing - I just don't quite know what best to do or say?

How well is she? Can you do "let's treat you as normal, not the woman with cancer" stuff? As in, could you take her out, shopping, going to a spa together, get friends together to do fun stuff - if she's up to it. I would suggest arrange things that have a focus that's not on just chatting in case you feel akward about avoiding the elephant in the room. Odd ideas like a day out she'd have loved as a kid, so bowling and burgers (but find posher versions). day to the seaside etc. You could talk to other friends for ideas.

Let her decide what she needs you for...listen, ask questions, find out what would help her most.

I've been where you are and I'm sorry. For my friend I think it was just listening she needed.

Another hug from me. She sounds like a good, close friend - so I would say the truth, that you don't know what to say and that if you get it wrong please would she tell you! And ask her what she needs or would like, take your lead from her.

If it were me, I would mostly want my friends to carry on being exactly the same sort of friends - talking about non-illness stuff, being honest and telling me whats going on their lives (but not expecting me to be there for them when I'm in shock/overwhelmed), sending silly little gift-ettes so I know they're thinking of me. Staying connected, without pressure.

That said, I know when I had a serious illness (not cancer, if it makes any difference) my close friends were much more comfortable with me once they'd asked questions, and understood a bit more about my medical situation and what it meant. It was only then that we could all let go of it enough to enjoy the rest, iyswim, and it helped when I knew they were taking care of themselves and not having to 'act ok' around me.

So if you need information, or support, then do take care of yourself - ask questions, come and get a hug here or in RL, and remember you're human and upset too

what a nice friend you sound !

Don'tmindifIdo gives excellent advice ( speaking as someone recently diagnosed with an uncommmon and fairly aggresive cancer ) .

The let's treat you as normal, not the woman with cancer is fantastic advice .
Everyone is different but that is the approach I want . Mixed with a little sensitivity to when/if I want to discuss it .

One of my brothers said he was a light sleeper and that if I ever wanted to phone in the middle of night I could . I havent ,but it's a kind thought .

I expect your friend is in shock ,but they will probably have a little longer to get their head round it than you . Waiting for results is an awful time .

The stages are usually diagnosis ,then tests to see how far it's spread and how extensive it is etc .
Then a treatment plan - ie what sort of chemo ,if they're going to operate .

There's a lot of info on here www.mumsnet.com/Talk/general_health/1741918--TAMOXIFEN-35-the-all-dancing-fat-boy-snacking-and-drugs-thread

about all sorts of cancer . I found it a little hard to get into the thread ,is has a well established "style" that you need to get used to but amber and kurrikurri have loads of up to the minute info on specific stuff and I would recommend PMing them if you or your friend want info . Ashokan is young poster ,in her twenties I think ,and has an unusal cancer and has been thru lots and remains positive . She's living at home with parents .

And this thread www.mumsnet.com/Talk/general_health/1647229-chat-and-hand-holding-for-those-of-us-supporting-a-DH-with-cancer-new-thread-for-the-new-year
might help you . We wont mind that you're not a partner !

MacMillan are good www.macmillan.org.uk/Home.aspx

Finally remember ,and tell your friend ,that treatment of cancer is incredibly fast moving . Plus is enormously well rescourced .
Things are changing all the time . Anything you google will be based on stats at least 2 years out of date and prognosis based on averages which will include people with late diagnoses ,and people who are not well generally .

Chin up .

I don't have cancer but my DS has a high risk brain tumour diagnosed 18 months ago.

It is very frightening for all concerned but it such a lonely road to travel. I find the isolation, the not fitting in anywhere hard and lonely. People don't know what to say and either say the wrong thing or nothing at all. The wrong thing, ie god has a plan, it will be alright I can feel it, positive thinking etc makes me angry. The not saying anything at all makes me feel lonely. I'd rather people said it as it was - it's shit, it's frightening, it colours every aspect of your daily life.

Many friends have dropped off radar but my good friends know me well. They know in an instant of talking to me if I want to talk, or if I don't, if I want a laugh or if I want to moan. They invite me to things but understand if I say no (they keep inviting me), or if I say yes and cancel at the last moment, or if I turn up and can only stay for 5 mins.

Once a month we have a girls night at mine. They know going out makes me anxious (being amongst a lot of happy people is hard) but they know I need the release of laughter. We get a takeaway and drink lots of wine, we laugh and we cry together. The most important thing is they hug me )I am s single parent) and let me cry when I cannot keep the facade up.

Listen to your friend. Friends are invaluable at a time like this.

Don't be afraid to use the word cancer - your friend has to be brave enough to face treatment and side effects. In our family we call it - Fucking Bastard Cancer - with capital letters - and the kids (17 and 15) take pleasure in being able to use swear words for it!

Min, I've seen you post on trazzle's thread, sorry you and your Ds are going through this.

Op why are you banned from the hospital? That all sounds very stressful.

thank you all, sorry for everyone currently going through or having experienced similar in the past, I will have a look at the threads linked to

I'm not banned in a bad way, just in a sort of shielding me from all the depressing waiting around kind of way so I'm chirpier when they get back I think (or more likely because I keep shaking, being sick and crying but it's happened so suddenly - three days ago nobody knew anything at all, there hasn't really been any time to absorb any of it, nobody even knows until tonight, not even her brother or wider family) but hopefully will be able to in some way keep Normal Life going.

So it just is going to be really horrible for her for quite a lot of the time and it's a matter of keeping things as normal as possible, providing relief or comfort or whatever as needed, making self available?

I don't want to know any more about the actual type of cancer though, spoke to someone about it before my friend went to a dr in a 'what might it be' way and they said at least is not 'terrifyingly dire prognosis type cancer' and lo, it is, I already knew more than I needed to so when it became apparent was not one of the more survivable types it was probably obvious that I was thinking, fuck this is bad this is really bad when I probably should have been more, fuck but ok, there's stuff they can do

and there is stuff they can do and some people do survive it

that probably doesn't make any sense, blame the mild strain of keeping her dad and cat company while we wait

You know, Mitch1nge, there will be plenty of people who are all Pollyanna about the disease. You know your friend best. If it were me, I'd quite like someone around who I could say 'damn..this is bad news' to.

I'm not saying don't be positive. But don't be absurdly unreal either. You're a real friend to this girl.

thanks, I hope I will never say anything quite as stupid as 'it will be ok' when how could anyone possibly know? But am phasing out 'oh my fucking god what the fuck it's so frightening it's so unfair what the fuck' etc as it sinks in and trying to think of more useful things like breaking the news to people she can't face telling. I don't know, I suppose there just isn't a guide to scary cancer etiquette anywhere and you have to do what seems best at the time?

Sounds exactly right, Mitchy. And as Ginger says, you sound like a good friend.

thank you, haven't felt like reading those other threads yet but have re-read this one and wanted to thank you all again for being so kind x

bumping in case someone knows of something anything I can do

like a magic spell that will definitely stop it

or at least something nice we could do together around her feeling sick

but mainly want it to stop

I think it helps if she's prepared a bit for what's ahead ,like if she's on chemo what the side effects might be .

I found the staff very reluctant to say anything ( other than my hair would fall out ) which I guess is because people react differently and they don't want to worry you .

You could maybe talk to her about who /what phone numbers she has to phone and about what . I would have liked someone at the hospital to say " if you're worried about a side effect you can ring and ask me " and if you can leave a message or email or if you're meant to bleep them ,or is it that only for emergency .
That sort of thing ,just check she has people to contact .

But I don't know if your friend is having chemo ( if she is ,I think the drugs they give you do control the sickness really well ) or if she's going straight for an operation .

For me with the chemo ,it's tended to be some not so good days ,then better ones . Not feeling bad all the time IYSWIM .

Maybe tell her she doesn't have to pretend it's ok ,that she can get upset with you ? But ...that might in fact be too hard for you both .
It's hard I know .

Flowers and nice smelly lavender stuff and hand creams are all good .

Dont know if any of that helps .

thank you, it does help

she's having chemo, for about 18 weeks I think, then they were going to operate and then radiotherapy - but I don't know if that will change now they think it is elsewhere? :(

the chemo seems to make her really sick even though she has anti sickness stuff to inject herself with

it's so horrible and there seems to be so little hope but I know this is an unhelpful way to feel

I am sorry to hear about your friend.
You sound very kind and I mean this in the nicest possible way when I say that you're asking the wrong people.
Yes, we mean well, yes, some of us talk from experience but we're not her!
People react differently and unpredictably in times of crisis: some will want to immerse themselves in it, reading up and sharing their fears while others will take a more 'business as usual' approach. Neither is right it wrong but you need to know what she needs and the only way to do that is to ask her.
Tell her you want to be there for her for whatever she needs, and that you want her to be very honest and explicit about the sort of support she wants.

I know, but it doesn't seem right that she will just end up reassuring and comforting me if I ask those questions so was wondering what kinds of things have helped other people

I should probably talk to mutual friends for ideas too?

Mitchy she must make a fuss about being sick and see if they can't change her drugs . Sorry if she's already done that and I'm saying the obvious . I think it's quite individual and what works for one person ,doesn't for another .

Everryone's so different and the treatments are different and I can only talk from my limited experience .
I take ginger supplements ( capsules ) from Holland and Barrett . I dont know if they're helping or it's just my good fortune .

I also find chewy ginger sweets really help " Gin Gins " again from H&B .

And sherbty tasting sweets like mentos ,dolly mixtures ,liquirice allsorts .

I think Eco is right about about telling your friend she can be honest with you . Of course she might not want to be ,or not at the moment .
Any response is possible and I know mine vary from day to day .
Sometimes I quite like trying to reassure people ,sometimes I dont want to talk about it ,sometimes I want to bury my head in the sand .
The latter one ,quite a lot .

I'm sure you could phone MacMillan and talk to them ,they will be used to hearing from relatives and friends who are wondering what to do .
And you need support as well .

Finally please remember that cancer treatment is really fast moving ( and I think much better funded than many diseases ) and that it is getting very effective at maybe not getting rid of what used to be very bad cases but in keeping it at bay ,stemming the tide .

I don't know if you know it ,but the treatment plan for your friend
chemo ,surgery ,rad /more chemo sounds very positive and they must think her condition is treatable .

Please dont forget to look after yourself in all this and talk to your own GP if you feel it's overwhelming you .

x

thank you, that's really kind of you, you're right of course, it just all seems so horrible for so long with such unfavourable odds but there's no other way round it or over it or out of it? there is so little anyone (family/friends) can do to influence the outcome

will suggest/send some ginger supplements though, hadn't thought of talking to Macmillan so will try that too, thank you x

Mitchy that's sort of funny ,it's the exact phrase I have in my head

" can't go over it ,can't go under it ,have to go through it "

Not that it's a helpful way to look at it because it's not a long tunnel getting worse and worse with no way out .

It's a bumpy switchback road with times when you can rest and regroup ,draw breath and wonder at how kind people are .

And lots of professionals who are very experienced and who will try and help .

thanks xxx

Can you give us a bit more info.Is it a rare/aggressive type of breast cancer? If it is I might be able to help a bit. I had triple negative breast cancer in 2006 and it is regarded as rare and aggressive as is inflammatory breast cancer.Its no good my banging on about these though if it is completely different.I do feel for you and your friend.