Questions family want to ask but not In front of the cancer member

Hi Sealion 

While the nurse may well be able to give you information on general survival rates what we end up with is little more than an educated guess rather than what will happen with your mum. Then of course if you were to get a prognosis how might it affect how you behaved.

In terms of carers the nurse should be able to help you get them a needs assessment from their local council see here.

One thing that really helped me was doing a living with less stress course, it helped me to focus more on the here and now rather than trying to plan the future over which I had little control and actually often guessed things a lot worse than they actually turned out. Life still likes to throw us some curveballs too and the conscious breathing techniques can prove quite helpful - as they sometimes say step back and take a deep breath.

<<hugs>>

Steve

Hi, 

My partver was linked in to our local hospice, and the nurses there were a great help in terms of thinking of the future; so if you are not linked into one then Macmillan nurse sounds like a good idea. 

i personally didnt want  to know timescales unless it was described broadly. I didn’t like it when numbers were used and I found I kept latching on to them when I knew and that was more distressing for me. This is a very personal thing so what I felt won’t be the same for you however. Again the hospice team was very helpful in working with what info I wanted and how so just think about what’s most useful to you. 

the challenge too of course if that it’s all a best guess, and there is no crystal ball to know what will happen. Bit I would say that planning sooner - even if things are not needed so swiftly- is worth it.

all the best to you. 

My uncle was diagnosed with liver cancer 7 weeks ago. We asked for prognosis as he wanted to know and they said 3-6 months at the initial appointment. Since McMillan nurses came in they told us he had short weeks and now we’ve been told he his taking his last breaths. It’s hard to calculate deterioration but you will keep a track of any changes and just monitor those as that’s a big sign with how the illness is impacting. Things like eating less or wanting to have cold drinks. Bladder control and weight loss and muscle wastage. You will notice the signs and the speed that these are occurring that makes you realise how quick the deterioration is. 

But just be prepared for it to be highs and lows. It won’t necessarily mean it’s all downhill. You may think she’s very very poorly and then all of a sudden you see positive signs that they’re picking themselves up. Ask for carers to come in. We had carers visiting 4 times a day and in addition we had palliative care nurses coming regularly for checks and medication changes. Being a carer is very hard as a relative. We said we would do it at home and we have done for weeks but we didn’t anticipate how ill my uncle would get. Things like having to be up through the night, deterioration like going to the bathroom using a commode. My uncle didn’t want us to help him in the bathroom and it was so so hard to say no  you have to use a pad. It would take 4 us to just try to help as dignity was huge and that is very important for everyone.  The question i asked in the last days is do we want to be carers or do I want to be a neice and enjoy these moments for him. It is more difficult now and he was taken into a hospice and it takes a great deal of pressure off us and we can enjoying final moments with him knowing he is in the best care without every day thinking I can’t cope anyway . He is now taking his last breaths.  I’m glad we asked about prognosis because it helped us prepare a little better but again for us we didn’t anticipate how quick things would change.  The macmillan nurses have the best experiences in knowing what stage a patient is at and although at times I would doubt what they would say about how long he has left, looking back they were right with their predictions. 

please remember to take care of yourself as well it’s a great deal of pressure on you so you have to also think what is the right thing for you. Be kind to yourself and stay strong. 

Great advice thank you x

Thank you everyone. I did ask the doctor and was glad I did. She had 2-3 months and went quickly. No one else in the family wanted to know so I kept it to myself which was the hardest part when they were planning for over a longer time.

It's is an individual choice that's not accurate but I'm glad I asked