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Stage IV

8 REPLIES 8
Marigold77
Member

Re: Stage IV

I live away too. Only get to visit about once every six weeks. Feels terrible. But we chat every day. I think our loved ones understand we have things we have to do and no it's not that we don't want to be there all the time. And let's face it we might drive them crackers being there all the time 🙂

Wbrt is tough. My mum turned almost anorexic not long after hers. It could have been the chemo, but I am not sure. She has hardly eaten since. Just tiny meals. She lost so much weight. Heartbreaking.
X
Jellylegs2
Member

Re: Stage IV

Thank you all so much for your comments and kind thoughts. Although I haven't replied I keep reading them and taking the help and comfort. Marigold - I'm glad your mum is doing so well and that you still have good times, it was reassuring to read your story. My sister is doing ok. She had her WBRT about 3 months ago now and has suffered quite a bit with memory loss and a stage of literally sleeping 23.5 hours each day. She does seem to be improving but very slowly and I guess one of the hard things is to know whether she'll be able to ever live on her own again without a carer. It's tough for everyone though I feel guilty as I live far away and only get to visit when I can. So life goes on thankfully and has strangely become the norm until the next news that blows you out of the water again. It's hard this cancer thing isn't it. Thank you all for your thoughts and advice, it's very much appreciated. Much love to you all xx
Marigold77
Member

Re: Stage IV

Hi,
I hope your sister is doing ok right now? It's a horrible situation I know - my mum, 66 at time of diagnosis, was diagnosed as having breastcaner in her liver lungs, bones and brain two years ago.
It's been an emotional couple of years with wbrt, chemo and everything. She is still with us, still at home. Mobility is much reduced, she can't get out and about much but can still manage a quick trip round the supermarket every now and then. and she has some minor memory issues but it's not all bad. We still chat on hone phone every day. She is about to start a me regime of chemo.

I never expected her to be here now. She never asked a prognosis but I know from reading albums it isn't good. But she seems to be exceeding most estimates and we still have nice times.

Hang in there, make time for you as well as all the other people you want to support xx
catseye
Member

Re: Stage IV

Dear Jellylegs,

 

How are you and your family? I hope you have been able to find out a bit more about what benefits etc your sister may be entitled to. As Butterfly said, it's great you are being so supportive and practical.

I hope her recent scan gave a bit more information as to chemo/treatment plan, as the waiting and coping with the feelings of helplessness are so difficult to deal with.

Thinking of you and your family,

X

Butterfly318
Member

Re: Stage IV

Dear Jellylegs

 

It is great that are being so practical, this will be a big help to your sister.  One thing that she will be entitled to is Personal Independance Payment  / Disability Living Allowance.  It has changed its name in some areas to PIP but was DLA.  She can ask MacMillan Nurses or Citizens Advice to help her complete the form as they know what to put on the form.  This benefit is not means tested so won't affect any other money.

 

Take Care   Gilly x

 

 

Jellylegs2
Member

Re: Stage IV

Thank you Catseye. Your words helped more than you think, sometimes it's just that someone will listen and acknowledge what my family is going through that helps.

The links are really useful and I will spend some time investigating them. There isn't a Maggie's Centre at my sister's hospital but I may contact them anyway as they may know a similar organisation at my sister's hospital. I feel if we knew where we were with the money situation then we could concentrate on the more important stuff.

My sister is about to have another scan to decide on her chemo treatmemnt and will have WBRT in the near future. She is being so strong, I'm so proud of her.

Thank you again for you thoughts and help.

Love and best wishes,

Jellylegs xx

catseye
Member

Re: Stage IV

Hi Jellylegs2,

 

I'm not sure how much helpful advice I can give you, but I read your post and was so sorry to hear of your sisters diagnosis. I didn't want to leave your post unanswered and hopefully this reply will bring your thread up to the top again and more people will see it and reply.

If you haven't yet done so do try giving the helpline a ring. I found them incredibly knowledgeable and always felt alot calmer after speaking to them.

Macmillan also have a helpline and very useful website, they will be able to advise you and your Mum on any benefits that may be available. Have a look at  www.macmillan.org.uk.

If there is a Maggies Centre at your sister's hospital they are also able to provide benefits advice and will have information on what support is available locally.Try www.maggiescentres.org.

 

I hope some of these suggestions help. Best wishes to you and all your family,

Catseye

 

Sam_BCC
Member

Re: Stage IV

Hi Jellylegs

 

I am sorry to read of your sister's diagnosis. This is such a difficult situation and our thoughts and hopes are with you and your family.

I'm sure you will soon receive valuable support and information from your fellow forum members. In the meantime if you need to talk things through, you could call our helpline – often, talking through your feelings can be helpful and the staff are there to offer a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

I hope this is helpful.

Best wishes Sam, Facilitator

Jellylegs2
Member

Stage IV

Hello. I've just found this site and thought I'm at the point where I need some advice and hope that I might find someone on here who might be able to help. My sister has recently been told that her stage IV breast cancer is now in bones, liver, lung lining and now some in her brain. She is a single mother with 2 little girls to look after. I don't even know what to ask - I have so many questions but in words they all sound so depressing. My mum will look after the girls after her death as their Dad now has another life aroad and isn't interested. Does anyone know what I could do to help in what seems to be a desperate situation. Money is a worry after her death for my Mum looking after my nieces and as nobody seems to be telling us timescales at this point...I just don't know what to do. My sister also lives in Scotland, a mammoth journey for me so it's not like I can just pop up every evening or even every weekend - I have my own children and feel I need to support them too as life carries on for them. She has been told she will stop Tamoxifen and start chemo and whole head (?) radiotherapy though they seem to be waiting ages (OK, only days but for us all that feels like ages!) deciding when this will start and I worry she doesn't have ages to wait!

Sorry for rambling but if anyone can help make sense of this situation and offer some practical ideas of how I could help I'd be most grateful as at the moment I feel like I'm running around doing a lot but not helping much at all.

Many thanks and much love to you all xx