Many times I have browsed this website but never written, so today is a first posting for me. My background is as follows - my Mum is suffering from secondary breast cancer. To keep it somewhat brief, she is ostreogen positive, had mast, chemo, rads in 06. Rediagnosed with bone mets this year for which she had rads, also had small tumour on neck removed. Now she has secondaries in the lungs and has recommenced chemo. However now they are saying chemo isn’t working (only had 2 sessions)and that she needs help at home 24/7 (district nurse, etc). They also mentioned the local hospice who will be in touch. Over the period of the last 48 hours she has gone downhill radically e.g. dozing, not really aware of it , behaving as if she was sleepily drunk…asking things of no relevance to conversation, limited coordination, etc. Her medication has been changed also but her team has said this behaviour is also typical of a cancer spread. I suppose I’m just looking for some support here from you guys. My Mum is only 58, has loads of help around her but it’s so scary…I can’t imagine a life without her. I’d love to hear some comments from anybody at all.
By the way, I think you are all fantastic and each and every one of you should be very proud of the way you deal with your illnesses.
Thanks
AndreaHope
I’m sorry but I can’t offer any advice as I’m fortunate enough to have only had DCIS but I didn’t want to just read and run.
My heart goes out to you as this must be a terrible experience for both you and your mom and I don’t have the right words to say to you. Have the hospital said whether your mom can go on a different chemo regime or have they explained what her current prognosis is? Is there any way the hospice can be contacted so that they come to see her sooner as I’ve seen from threads on here that they can be very helpful.
Have you thought of telephoning this website and talking to the nurses as they have experience of many different situations and I’m sure they will be able to help you.
Andrea
so sorry that you are going through such a horrendous time. It is good your mum has you to care for her. I would ring your mums chemo team at the hosp and explain again how worried you are. Ask them for the hospices no. that mum has been referred to and ask when you are likely to see the district nurse as you need help to cope with all of this. If you need advice that we are unable to give the help no. on here is 0808 800 6000, dont be afraid to ring them, they are great.
It is so hard to watch this disease take over the life of someone we love. I hope we can be of help here in our support for you during this time. You say that you have been told your mum needs help 24/7 but not if this is in place now? I would say like dipstick that if it is not please keep chasing them. Not only does your mum need the help of the hospice nurses now but you need their support too. You say she is dozing a lot and not very aware - but I was with a friend quite a lot in her last week and although she appeared very sleepy and not apparently aware - she actually was very aware of people around - just not really able to respond. I am sure your mum is more aware of you with her than you realise and will find your presence very reassuring.
Andrea
Do try and get as much help as you can, there is support out there but sometimes, unfortunately, you do have to go out there and look for it. I have to agree with the others, the hospice people can be just marvelous (not just medical but also practical help on getting the financial benefits your mum is entitled to etc.
Some of the ‘confusion’ you talk of can be due to to pain-relief medication - I was really out of it, flying and didn’t make a lot of sense to anyone. Take heart and accept every offer of help.
The district nurse should come the same day as requested - you can phone and ask for one to come and see your mum.
Contact your local social services department and ask for an urgent assessment for home care and benefits
Contact your Hospice directly and tell them you need a visit.
You could also contact your nearest Macmillan nurses.
Your Mum will be very aware of you being there and hearing what you say.
I’m so sorry that you’re in this situation. My mum also has secondaries in her bones and lung and her chemo was stopped in July. We have been lucky because mum has a wonderful GP and he has organized all of the support for us. Maybe you could contact your mum’s GP to make sure that you have been referred to the hospice, Macmillan etc? Also, as Blondie says the medication can have all of the effects you have described. Back in July my mum was confused and really sleepy but that turned out to be mostly the pain relief and anti-sickness drugs. The GP changed these and altered the dosage and she is really quite well at the moment. We never thought we would see her up and about like this again so there is hope and there is also a lot of support out there for you and your mum.
Thanks for the replies…everything a bit hazy now. Mum is in hospital with suspected infection so trying to stabilise that at moment. Her white blood cell count is very low at 0.2 and she is quite confused…any thoughts?
Her support team are great and I don’t have any doubt about the care being provided for her. Maybe I didn’t come across clearly, it’s just the word hospice is very frightening. What type of time span are we looking at when you mention hospice? I know this is over-generalising but I would appreciate any honest opinions/answers. Due to meet oncologist very soon.
I was diagnosed with bone mets at xmas 07, the local hospice have been marvellous. I too thought it was last place to go, but the staff are fab, supportive, they listen and listen and listen, even if you keep saying the same stuff. As for time span - dont even go there - I am 46 with a 13yr old daughter and hospices are for help and support, yes there are poorly people there, but there are also the staff who look after all family affected by cancer. The palliative care I have had has been brill and my daughter was fortunate enough to access a child specialist counsellor when she was having a bad time over me. Please look at the hospice as a way of support, take all the help they give you and dont be afraid to ask. I went to have a look around at the daycare bit, it was lovely. Yes there are rooms for more poorly people, but I didn’t go down this part.
I know it is hard, but you will get thru this - take care and i will watch for your messages
Hi Andrea,
I am so sorry to hear about your Mum. Having an infection can lead to confusion, so that may be the explanation. Or it may be the medication as others have said. Of course it could be that the cancer has spread, too.
I know the word hospice is a very scary one, but they offer a lot more than just ‘end of the road’ help - there are a lot of outreach services and other things on offer to people at an earlier stage of their cancer. As soon as I was diagnosed with secondaries I was referred to the Macmillan nurse and that freaked me out. I just met her once and she gave some helpful advice on benefits, etc, and haven’t seen her again.
I think the only people you should listen to about her prognosis is your Mum’s medical team - I’m glad you have an appointment with the oncologist. It might help to write down all your questions beforehand, and take a pen and paper so you can write down what they say. You are clearly in a state of shock over what’s happening (who wouldn’t be?) and it’s difficult to think clearly and take in information. Do you have anyone else in the family to share this with? I hope so.
Sending hugs,
Jacquie