For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Hi there, I have terminal cancer and I'm really struggling with getting my head round not seeing my 5 year old grow up and I thought it might help if I could speak to some other mums put there with young children. Thank you all. Katie
I've got 2 little ones too. This is the one bit of this journey that I also struggle with the most. I find that I try to put it out of my head as much as I can because if I go there I end up a big snotty mess.
I have found my priorities have changed, I am now for making memories and spending time together and to hell with all the boring stuff!! I pay someone to come in for an hour to give the house a clean which frees up our weekends, weve gone away for short caravan breaks - entertainment, walks on the beach, rock pooling whatever u enjoy and I stay as positive as I can. And I'm still working too.
While my journey has not gone quite as I would have liked, I am not planning on letting it win yet and giving it as good a battle as I can.
If you would like someone to talk too by all means drop me.a message xx
I am really sorry you find yourself here. My kids are a bit older - 15 and 19 now but 10 and 14 when all this started. So they’ve been living with it a long time. I agree with Daisiedoo - put it out of my mind and live in today. There’s no mileage in dwelling in what you won’t do when there’s something nice to be done today.
Can I ask - have you been told you’re terminal? That probably sounds awful but I’ve found a lot of people are told they are incurable and their minds understandably go to “I’m going to die” and in a short hop to “terminal”. I speak from experience. But there are so many new treatments out there these days that many of us here in the incurable group have lived long past our sell by dates. These days, doctors and indeed Macmillan are starting to use a new terminology - people who have cancer that is treatable but not curable. I find this an easier place to live. It contains an element of hope. Maybe you know all this already. Maybe not. I hope it’s helpful.
What is a community champ?
I too am really sorry you find yourself here. I have three children under the age of 11. My youngest is 7 but was 5 when we first told her I had cancer. It's very difficult and can be overwhelming.
I too try and live in the day and not look too far ahead but that's much easier said than done. School were fantastic in their support of the children and I also got some help from a cancer charity to provide some play therapy once it became clear they were struggling a little.
Lots of cuddles, lots of fun, lots of laughing and lots of 'normal' amongst the hard. I was advised to be appropriately honest and make sure they weren't imagining what was happening and so make up their own worst fears. Making sure they heard facts from me was vital too; I once had a well meaning friend spill some beans and that was dreadful. Making sure people didn't ask me too much over their heads became important as well and I developed great skill at diverting the conversation - well meaning but not fair on the children.
You know them best. Take loads of photos... Enjoy your time.
You're not alone, so lovely to meet you.
I am mum to an 11 year old boy and was told the same thing. He knows his mum is ill and I have had age appropriate conversations with him. However our relationship involves lots of hugs and cuddles, doing lots of fun things together . We have a strong loving relationship and I enjoy every minute of it . I can’t change my current circumstances but can focus on us having good times together . I have really found everyone here very caring and supportive. I am sure you will find the same . As you can see many many are parents but all are kind caring and there for each other . I send you a virtual hug . My son isn’t as you as your little on but if I can help in any way to support you I am there . Take care xxx
I can surely appreciate where you are coming from. When I was first diagnosed my 2 girls were 8 and 10 and the prognosis was 12 to 18 months.
it was devastating and I was sure I wouldn’t see them move up to high school let alone see one of them go to college. As I was going in to hospital and then having chemo I knew I had to tell them I wasn’t well. It was challenging to say the least.
I cried many a night when they were asleep in bed but whilst they were there I put on the brave face they needed to see. At least before I had the surgery I did.
I soon learnt that wasn’t the answer. I ended up in to much pain to keep that bright smile and happy go lucky persona going. But somehow we got through it.
We kept their lives as normal as we could, they still went to school every day but weekends and school holidays we crammed in as much fun as we possibly could. Day trips to the seaside,cinema or park and weekends away.
Ive been extremely lucky and all the treatments I’ve had have worked to some degree and my girls are now 15 and 17. It’s obviously had a massive impact on them and they are aware that things can change overnight. I know it must have affected them but they seem happy.
Make memories and have as much fun as you can whilst you can. Whilst you can’t change the inevitable you can make the here and now count. That’s what helped me in the beginning.
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