Here’s my situation...
My mother was diagnosed with a very rare form of cancer in February. Even our specialists had to Google it, which doesn’t fill me with much hope.
The cancer originated in the womb and has spread to both ovaries, pelvis, abdomen and both lungs. It’s now at Advanced Stage 4.
The word ‘terminal’ has never been mentioned by any of the specialists but I can only assume that with stage 4 secondary lung cancer, prognosis isn’t great. But why isn’t anyone telling us?! If she only has weeks or months rather than years or decades left, why can’t somebody just hammer it home and tell us to prepare for the worst so we can at least make plans? Plans to make memories and just as importantly, plans for my disabled father once mum leaves us. We always assumed, as he had a stroke at age 36 (now age 65) that he would be the first to go, but sadly it now seems that’s not the case.
Where am I going with this post?
Ah yes - communication. It’s been AWFUL since mum was diagnosed. I used to speak to her 3-4 times a week but since diagnosis it’s gone down to 1 or 2. She is very much in denial I think. As a family, we don’t respond well to bad news - I am the only one that brings up the bad stuff but as this requires input from my mum then I just feel like everything is currently in limbo. She is still going into work despite being on strong painkillers, just so she has a distraction.
A series of questions;
1. I know I shouldn’t Google but I’m getting no answers from the NHS. From what I can gather, she may not get to see 2022. Correct?
2. How do I speak to her about it? We need to make sure she gets as much out of the time that is left but every day that passes seems like a day wasted. Does she know more than she is telling us? I guess it’s likely.
3. I need to do right by my dad and make sure he is cared for after mum’s passing. Can I do anything about this without my mum’s say-so?
Apologies for the length of this post and lack of direction. As you can probably gather, my head is in all sorts of places right now.
Hi and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your mum’s diagnosis.
I have been on my cancer journey for over 21 years and yes, at times communication can be challenging, at times you have to be your own or another’s advocate getting your pointy elbows into the system. Making assumptions and consulting Google is not the best way to get facts so keep pushing.
A cancer diagnosis in the family can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey will help you navigate this difficult time.
The Community is organised into cancer specific support groups so can I recommend you join our supportive Lung, secondary cancer group as this will be a good place to connect with patients and families navigating the same type of cancer treatment journey.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Family and friends, Carers only and supporting someone with incurable cancer groups as you will connect with others supporting family and friends through their cancer journey.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best
Hi and a welcome to you as well.
I don’t know what brings you to the community but we have various Cancer specific groups and the second list is for our various other Cancer experience groups. Do have a look through the groups and do join one if you feel you need to do that.
The Macmillan Support information is in my reply to .
Always around to help.
