To ask how long or not

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your mum’s diagnosis.

A cancer diagnosis can bring a lot of confusion, stress and many many questions on all the family including what does the future hold but some cancer patients just don’t want to know the details - hard for you all.

Talking with people who are on the same type of cancer journey can help a lot so can I direct you to our very supportive Lung Cancer and Spinal cord tumours groups.

Posting in these groups will open up your concerns to a wider group of people who know exactly what you are dealing with at the moment.

Follow the link I've created, join the group, then hit ‘start a discussion’ and you are ready to go.

You could then copy and paste the information from this first post into your new discussion or you can also join in with existing ‘discussions’ by clicking on 'reply'.

You may also find our Carers only group a benefit as you will connect with others supporting family through their cancer journey.

All the best.

Hi

I am so very sorry to hear about your mum. I think Mike Thehighlander has given you some really solid places to start thinking about this. Shall I put in the touchy-feely patient bit?

I’m living with incurable cancer and I do you understand the drivers behind the question: what’s the prognosis? But over the years I’ve come to understand that it’s not quite so straightforward. Often the answer is: it all depends. It depends on how your mum responds to treatment and how well she is now at the start. It depends on whether a new treatment becomes available or she gets onto a clinical trial. It might simply be too early to say. There are so many factors. 

There have been times when I’ve needed an answer for a practical reason. I did ask about my prognosis when I was looking to have the mortgage life insurance payout. If I had a less than a year to live the payout was in full. Obviously this was an important question.

But I wonder why you feel the not knowing your mum is prognosis is adding stress? What would change if you knew? Is it actually that you really are looking for some certainty in what is a very uncertain situation? Maybe this is an avenue that is worth exploring.

Ultimately your mum is the adult and is the patient and if she doesn’t want to be told her prognosis then you won’t be told. But that’s not a very constructive way forward.

Can I speak straight from the heart? I’ve never had pressure from my family to get a prognosis and I’m not sure how I would have felt if they’d tried. I think I would have been very upset.

 I’m sure everyone in your family is scared and trying to find something solid to hold on to. I’m not sure a prognosis is the answer. 

I do hope I’m not being impertinent here. I hope I haven’t gone too far. I might have. 

I wish you all the best. 

Thank you. Not at all impertinent.  This is all very new,12 days. The reason,  if it is one, is my father has dementia and we need a plan

Hi

Gosh. Yes of course it’s a reason. Your family is really up against it and you do need a plan. If I were in your shoes I’d be pulling out all the stops to make sure all the right people have as much information as possible and putting the safety nets in place. GP, carers/care home, hospice, family. There’s going to be uncertainty but there shouldn’t be a need for chaos. 

My thoughts are with you