How do I support my Mum.....

[winnie]

Mum was diagnosed with lung cancer last year. She is 52. She had been ill for two years and is currently int he process of making a claim against the hospital for medical negligence as big mistakes were made in her treatment and it should have been diagnosed earlier. Anyhow, she underwent major surgery within 4 days of her proper diagnosis to remove the T2 tumor and was then given the 'all clear'. The surgery took a long time to get over and in the coming months she seemed to get a little better but not properly so (in lots of pain, sleeping alot, unable to do anything physical etc)since about Sept she has been getting progressively worse, has done less and less and basically spends her days sleeping or in pain, she has also lost a stone in a very short space of time. She has aged dreadfully. She has been getting more and more depressed and has seemed convinced the cancer is back. Anyway after much pushing for follow ups etc she finally had a full body scan and today she has been told that she has a growth on what is left of her lung, 'something' on her spine and shoulder and 4 broken ribs. I just feel sick. My dd (15) who has always been very close to Mum & is distraught (my Dad unexpectedly died only 3 years ago at the age of 56). I know Mum hasn't been told the cancer is back but given the amount of pushing for a diagnosis in the first place and then the amount of pushing for follow ups we are all very sceptical. Dh had cancer years ago and is very much of the mind that one has to remain positive but today I just feel all over the place. How the hell do I support the people I love?

Oh Winnie. I'm so very sorry that this is happening to you and your mum and your family. You are not selfish. Really, really, really. This is a horrible, awful, scary time. And of course it brings back all your memories of other horrible, traumatic times and particularly of losing your dad. It is no wonder at all that you're in bits. You're a very lovely person- I wonder if you truly realise that? I know I've never met you but for me it honestly shines through in absolutely every post you write. I have no doubt at all that your your mum is extremely proud of you and glad you are around to support her right now. I'd bet millions your dad was proud as punch of you too. And I know that doesn't help- because lovely, fine people get terribly scared and tearful and think why the fuck is this happening to me and my loved ones, just like anyone else. And that is ok and it is allowed and it is necessary. It doesn't make you selfish at all. It makes you the truly loving and lovable person you are.

ScummyMummy,your post has made me blubber thanks for your kind words (and yours too wickedwaterwitch). Thank goodness for Mumsnet

You're very welcome though I didn't mean to make you cry!

winnie, I'm so sorry. No wonder you are so cut up, knowing your mum is scared and ill (whatever she has) and you can't make it all go away. Your mum cries with you, openly admits to you she is scared - you have a great burden to carry there, don't forget it. You and your dd always come across here as lovely, deeply caring people as scummymummy says.

I am so sorry cancer has claimed so many people in your family. They say the likelihood of recovery is improving so much year by year, so I hope that thought can give you some comfort. I sit next to someone at work who is in a lot of pain. She had cancer and now suspects it has returned. It is so difficult to know what to say to her. Sometimes being relentlessly positive isn't the right thing to do, admitting her fears are logical is what she wants to hear.

Tigermoth, thanks for your post. I have realised from rereading all of these posts that it is ok to rage and be sad keeping positive isn't necessarily possible all of the time... and I think that accepting this will help.

Mum maybe going into hospital today as her breathing has got so bad. Casualty and oxygen is not enough . Am banging my head against a brick wall as Macmillan Cancer Relief can't help until she has a diagnosis, dr won't tell my anything and simply advises me to go with her to the appointment with consultant (not until next week). Am about to start a new job, am trying to look after dd and dh has decided he is having a crisis and thinks he should move out afterall, and ds at 4.5 has turned into the child from hell. I am going to spend all day as I meet my new colleques mumbling under my breathe "I will keep this together, I will keep this together..."
Thanks for listening, feel a bit better for letting it out

She has been admitted and I am simply waiting to hear what is happening

Oh winnie, I just read all this. What a horrible situation. I'll think of you and your family tonight. Where do you live? For some reason I have you living near me. If you're anywhere near East London, drop me a line : jj at flubus dot com .

Winnie, I'm so sorry. I've been there, I was there when my dad was admitted to hospital because he could no longer breathe unaided. Can you delay starting your job to give yourself some time to deal with all this? I have lots of links to child from hell threads, I'll start a thread with them in a minute if I can, there might be something there that'll help. I know you've got an older child too but you never know, there might be something useful in one of them. Your dh sure is picking his moment isn't he? Please email me on wickedwaterwitchy (don't forget the Y on the end) at hotmail d o t com if you want to know anything or if you want to 'talk' off board. Try to be good to yourself.

JJ & WWW, thank you for your messages. I may take you up on your offers and email you for a chat offline. I am feeling very frustrated today as my mothers partner refuses to keep me informed about anything and I spent last night running around like a headless chicken trying to find out what is going on.

WWW, I have a couple of weeks before I start my new job but don't feel I can ask to delay the start of my new job for a variety of reasons (not least because of the type of job it is). It is only sixteen hours a week (although I will be working one day for the charity I currently work for too) but as I am not working full time I am hoping there will be a some time to support Mum etc., After Dad died I was a SAHM had taken on everything and once it was over I ended up going a bit crazy. Am affraid of losing it. Dd hasn't gone to school yet this morning as she is in such a state but I am putting her on the bus soon as, although it seems harsh, I think we have to try to carry on with life as normal as is possible.

Anyway, thanks for listening.

I know that feeling of being afraid of losing it too winnie. x

winnie - lots of love to you. lost my dad 6 yrs ago aged 50 to bowel cancer after he was wrongly diagnosed with ibs. in between diagnosis of cancer and him dying it was 4 wks. dont forget you need someone to - at the time of my dads illness i was so busy trying to be strong for everyone else as well as working full time and having 2 small children i nearly burnt myself out. cant recommend bacup highly enough.

Winnie, wish I had some magical way of making you feel better if even for a little bit. And I've never been in the situation, so I have very little advice.

Sometimes when one of the boys is too much for too long and everything else is crashing down around me as well, I decide not to give in them, per se, but to give them what they want before they want it iyswim. Yes, they end up watching too much tv or eating crap or going to bed late, but they haven't won a battle and I haven't had my head done in by the screaming and destruction. There's only so much I can deal with at any given point, so that's my damage-limitation technique. If I try the 'good parent thing', I turn into the insane mother from hell, which is worse. It's not a permanent thing (the junk food, etc) but helps me get through a tough time.

I'll be thinking about you.

KathH,WWW, & JJ, thankyou for your kind messages. JJ what you write does mske sense. Anything to make life a little easier on oneself.

Tonight I am just so exhausted. Dd is so distressed I am at a loss. Want to make it all better but can't. We are all fearing the worse. In some ways I think it is better for everyone if life remains as normal as possible and yet I know that we all need to express how we are feeling. Spoke to Mum twice today, her breathing has certainly been stabilised. Am going to take dd to see her tomorrow. We are all awaiting the results of yet another scan which she is having in the morning.

I met dd from school and with ds we went out for milkshakes and cakes and wandered around bookshops and treated us all to a book each. It seemed surreal and bizarre to be doing such things.

Dh is taking over a bit and following a discussion two nights ago has not mentioned his crisis since. Am putting it to one side at the moment in order to just get by.

Any advice on how to help my 15 year old dd cope would be much appreciated. I have spoken to her head of year today.

winnie, there might be something here that might help your dd. I do feel for all of you, it does feel surreal and weird to be doing anything normal when something so enormous and terrible is happening. Are you going in to see your mum soon? I know it helped me enormously to talk to my dad and spend a lot of time with him, there was nothing left unsaid when he died. I'm sure you've got a while to talk to your mum though and it sounds as if she's more comfortable (sorry, horrible hospital type word but I can't think of another one).

Oh Winnie. I am a brand new MN, but I feel so sad for you. My mum died of cancer 6 months ago. My son is 18. He carried on seeing her til the day before she died. Spend all the time you can with your mum. My mum deteriorated so rapidly she wasn't even referred to the local hospice in time. Our 'angels' were the district nurses who came 2-3 times a day while my dad, sisters, brother and I looked after mum at home. Not nearly as easy with one so young as your ds to care for aswell though. Take care.

winnie, sorry all this is falling on your shoulders. I had those surreal moments when my mum was ill. Doing something ordinary that on one level was a treat, but knowing everything outside the temporary bubble was dark and uncertain. I hope you can live for the moment - try to do this, it will help you through.

I think it helps in another way, as well. When you talk to your mum, you will have something fresh and normal to talk to her about (when she is in the mood to hear it, I am sure you are very sensitive to this). My mum really wanted to know about the normal bits of our life, I think it took her mind off everything and for a minute we could kid ourselves things were the same as ever. When she became ill, and especially after she was diagnosed, we had lots of small shopping trips together to buy babyclothes for ds, shoes, anything really - we got lost in the looking and the choosing.

I hope your dd manages to keep going, my heart goes out to you and her.

liseyloo, I've been thinking of you, how are you?
I could howl at the world today thinking of the grief suffered by everyone on this thread alone

We truly, as a race, take it all far too much for granted

blodwen, my Mum nursed her mother at home as she died with lung cancer, none of us have any illusions and dd was 4 at the time and we let Nanny and dd have lots of time together. Ds is rather a different character though. I know that if the diagnosis is what we are expecting Mum will want to be at home and I have promised her that I will do all I can for that to happen.

Tigermoth, that is a nice point about having something normal to talk about. And you are right living for the moment is important.

Thanks for the link WWW. I have skim read it and will go back to it properly before dd gets home. Dd is a wreck at the moment and I am having to force her to go to school. Yesterday she spent half the day with her head of year she was so inconsolable She is simply crying all the time I am taking dd to see Mum later today (she wants to go). I have tried to speak to Mum on the phone today but she is in such a state she can't speak. Have asked the nurse if she has had the results of her scan and was told that the nurse didn't think so! Am feeling really guilty as I want to race off to see her but can't because I've got no one to collect ds from nursery so have to wait until later. Have thought of taking him out of nursery but really need not to take him with me today as he is such a live wire (and he is getting over a chest infection) a hospital is not really the place to take him. Thankfully, dh is coming home earlier tonight so he can have ds.

Our worst fears have been confirmed: Mum has secondary cancer and it is spreading. At the best she has months to live Any treatment is going to be to prolong life only so she has to decide whether she takes it and suffers the side effects or doesn't and has some quality of life (whatever that means). Feel really angry and frankly broken hearted. have somehow kept it together in front of her and the children but can't stop sobbing now I am at home and the children are in bed/at a friends. Macmillan nurses are now involved so that when Mum goes home she has some support. Feel crazy myself

Winnie, I am so sorry to hear your tragic news. Life just isn't fair. I quite understand that you are broken-hearted. We were told my mum had about 6 months, but it turned out to be 6 weeks. Make the most of every moment you can. (((((hugs)))))) to you all.(sad)

Thanks Blodwen. Fell asleep very quickly last night (I felt exhausted) but have tossed an dturned for the last hour so got up. Am wondering if I will do anythiing but cry in the days ahead

winnie, I am so sorry.

tigermoth xxx

Winnie, I'm so, so, sorry, anything I say will be inadequate.

Dear Winnie, so sorry to hear your news. I wish dd you and your mum much love and the strength to face this tough time together. The district nurses were wonderful when my mum was dying from cancer.They were available 24 hours a day and so supportive. I have never forgotten them -8 years later.I am sure you will get wonderful help.My mother wanted to be at home and although it was a scary thought at first, we coped and I know she felt better and calmer for being at home with us all, as did we for being with her 24/7. Take care GRMUM xxx

winnie - dont really have the right words - if there are any right words. The only consolation i had in knowing my dad was gong to die was the fact that we could say things that we'd never said, altho we got on really well we weren't really an i love you kind of family iyswim and when he died i did get a lot of comfort from the fact that we'd been able to say all them sorts of things. take care - thinking of you.