Mum's stage 4 diagnosis

[Polly2018]

Last Monday my mum was diagnosed with a non-specific stage 4 lung cancer. I say non-specific as the consultant does not want to put her through a bronchoscopy as he has suggested that whilst it will reveal the type of cancer she has, it won't ultimately change anything in terms of treatment. We've been told that it's palliative care only and have an home visit appointment with a nurse to discuss pain relief plans and options later this week. Beyond that I really don't know what to expect in terms of prognosis, deterioration and how quickly things will take hold. The consultant has said she has months not years but said to take things on a month by month basis. The social services contact I've seen who had already organised aids for the home prior to diagnosis has said she would suggest taking things on a week by week basis. Mum is in pain on some days, sleeping a lot and showing some signs of confusion, she was incredibly breathless due to fluid build up but that seems to have eased. I really would appreciate some advice as I have felt lost since the diagnosis and it's still a few days until we speak to anyone official. Thanks.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello Polly2018

I am very sorry to hear about your mum’s diagnosis, this will be a very difficult time for the both of you.

As you know, no-one can give a time scale on your mum’s health, however the GP/ Palliative care team will be able to guide you through what symptoms to expect and as they occur how to deal with them. The palliative care team are the experts in pain control and will be able to help your mum feel comfortable and give advice on alleviating symptoms.

Maggies centres are a great place to find help and support both for yourself and your mum they are in various locations throughout the country, I have added a link below

Maggie’s offers free practical, emotional and social support to people with cancer and their families and friends. Help is offered freely to anyone with any type of cancer. Simply drop-in at any time - you’re always welcome.

maggiescentres.org/how-magg...

The Marie Curie web site has a wealth of information on caring for someone at home and will also provide support for you it is well worth a look at

mariecurie.org.uk/

If you would like to speak with someone please give us a call on our nurse led helpline Freephone 0800 358 7200

Kind regards

Roy Castle Helpline

[karai2]

Hi Polly,

My dad was diagnosed with stage 4 NSCLC around Easter. We had a really rough time for about a month in hospital and ICU but he managed to pull through. He's currently on his 3rd round of Gem/Carbo palliative chemo.

We've been finding taking a very day by day approach helpful. Just because he's worse one day doesn't mean the disease is progressing, rather than that today is simply not a good day. Having palliative care involved and getting really good pain relief has also been excellent for Dad. He was also quite breathless but having 1L drained from his lungs and 1.5L from around his heart helped a lot.

I'm more than happy to talk to you if you'd like. Sounds like we are both going through a shit time at the moment.

[Polly2018 in reply to karai2]

Thanks for your reply. It's such a nasty disease. Mum has now had 7 day morphine patches prescribed and I'm hoping that will help. Since my first post, mum has been seen by both the nurse from our local hospice and the community nurses. The meeting with the hospice nurse was tough as she indicated the prognosis (which mum wanted to know but then wished she didn't). She asked mum her views on end of life care and whilst we told mum this is normal practice, it's really scared her that she doesn't have long. Mum's had good and bad days over the last 2 weeks and is sleeping much of the day, has started feeling really nauseous and is generally very down. It's hard to pick her up when you know she may only have a few months.

Good to hear karai2 that you dad has found some relief from the fluid drain. Hopefully it will ease his breathlessness; mum had just half a litre drained and that helped. Take care

[Polly2018 in reply to Polly2018]

I’m sad to say that my mum passed away on Sunday. She hung on for 10 days without food or drink and was non responsive for all of those days due to the meds but she was pain free and her passing was peaceful. If I can give advice to anyone facing this tough battle, it would be to make the most of every day, be prepared for the bumpy ride ahead and be there for your loved one. My mum only had 5 and a half weeks following her diagnosis and despite work commitments, my mum probably spent most of that time with my sister, me or all of us together. It’s been a challenging journey but now she is at peace.