Information about palliative care for my beautiful mum who has Pulmonary Fibrosis and Lung Cancer

Hi  and welcome to the Online Community bu I am so sorry to read about your mum and the challenges you are all facing but I do hope you will find the support available in the community helpful at this difficult and challenging time.

Talking with others who are walking the exact same type of cancer support path (my one is completely different) will help you navigate this unwanted journey.

The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many dedicated support groups to connect into and when it comes to the practical challenges of supporting someone on palliative care you may want to join our supportive Carers only and Supporting someone with incurable cancer groups where you will connect with others with first hand experience supporting family and friends.

Navigating the community will depend on the device you are using. To join a group just click on the Green links I have created above.

When the page opens choose 'click to join' or 'join' (This may show as a black box with text - just click the black box)

You can then introduce yourself by putting up a new post by clicking on the words ‘New Thread’ or hit the box with the X on the top right (mobile devices)

You could just copy and paste the text from this your first post and you can also join in with existing ‘Discussions’ by clicking on 'reply'.

It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section. 

If you need any other help navigating the community do come back to me

All the very best ((hugs))

Hi Debsyb23, 

I'm new to this forum but in a very similar position to you.

My mum received a terminal lung cancer diagnosis in July, she has pulomnary fibrosis and emphasema too so its complicated. During diagnostics, she suffered a number of strokes which, although bad at the time and requiring readjustment, she has largely recovered from. She is at home but getting weaker by the day and the coughing is getting worse. 

Mum has been offered one targeted dose of radiotherapy if the coughing is being tolerated less but equally, she was rejected for radiotherapy as a treament option as she could have an inflammatory response to treatment. Its difficult to know which way to go really and she is frightened to try it anyway. 

My biggest concern (like you) is where to go when she's unwell. She has a palliative care team who we have yet to meet (I'm assuming we will when she's less able to do things?), she attends LOROS as a day patient once a fortnight and the doctor there prescribes medication and then there is our GP, who varies with their effectiveness. The day patient option is becoming less usable as she becomes more unwell but its a useful option to have (both for mum and dad).

Do we use all of these people? Or do we use specific ones for specific things? And when will she be considered unwell enough to move into a hospice (assuming there is space)? 

My dad is finding it increasingly difficult to care for mum and, like you, we're trying to be brave. 

Sending love back to you both.

Hi  and a welcome to you but sorry I so sorry to read about your mum.

I see you have already joined some of our specific support groups, these groups are where you can talk with others who are dealing with the same issues you are facing so do connect in with Carers only and Supporting someone with incurable cancer groups as you will connect others who understand.

The Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service a good place to ask questions, get emotional support, benefit and financial guidance or just a listening ear.

((hugs))

Hi Jane, we’re sitting nervously in the hospital waiting to see the oncologist, so sorry to hear about your mum and thanks for reaching out. I’ve moved in with mum and I’m navigating my way around all of the different people to establish who is who so you’re a bit further down the road in terms of having all of the names and people in place! We haven’t seen the palliative team yet either but I think I may have tracked them down or found a route in via the physio. I will also ask about it when I see the oncologist, district nurse and GP! I sense resources are very stretched. 

The best questions I have to ask today that I can share are

pros and cons?

for pain or prolonging?

What do you hope to achieve with Palliative Radiotherapy?

Can it happen later?

At what point is it no longer an option?

Hope your mum is comfortable and you’re doing ok  too I also had a good chat with one of the Macmillan nurses via this service on the phone.

Thanks Highlander too 

Hi Debsyb23, 

I hope your meeting provided you some answers. I always find they generate more than you answer early on but it does get better. 

I'm not sure I understand your questions but my mum chose not to take the chemo option - she felt the benefits didn't outweigh the negatives and wanted to spend her life living. It was a hard decision but the right one for her. 

With the help of the GP, mum completed a Respect form to highlight how she wants to be treated. As part of this, she noted pain relief and reducing day to day discomfort. The palliative radiotherapy will, I understand, reduce the amount of blood she coughs up but its a temporary measure. I'm not convinced she is keen to try it - its on the table. 

Mum is waiting for a review appt at Loros - her morphine has increased and a side effect is constipation. Not what you want on top of everything else. 

Please ask about support for you now you've moved in with your mum. My mum is coming increasingly irritable and dad gets the brunt of it. If you're looking after your mum, you need to look after you too!

Sending lots of support.