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.
It's only been ten days since I heard my diagnosis of stage 4b from the smallest of symptoms which took me to my GP only about a month ago, and in a couple of hours, I go to the hospital for my kidney function test pre palliative chemo.
In this context, reading your post this morning has been a healing balm.
- I am not fond of the oncologist at all and neither is my very supportive partner and had not thought about asking to change
- I knew that no-one knew (prognosis) but reading that you were told 12 to 18 months (I was told 17) and are with us 6 years on is encouraging me not to spend the majority of my time thinking and planning for my exit.
Thank you so much and very best wishes to all on this wonderful forum
a newcomer x
I should have added that I did ask. But I was in such a state (end of diagnosis consultation where I was told all in one go that 1 I had cancer 2 it had spread 3 it could not be operated on 4 they didn't know if the chemo would help...) that perhaps I didn't realise what I was doing. The answer, however, even from this oncologist I'm not fond of, was very measured and tactful. He did answer, but I felt he made it very clear that no-one knows. The figure still hits you like a ton of bricks. I suspect it doesn't matter what the figure is and that it's probably the same if you go and see a palm-reader. :-)
Lordy. I’m so sorry to hear about the ton of bricks that’s just landed on your life. Welcome to the club no one wants to join but that so many of us are glad we did. I’m glad you found this conversation calming.
I hope your kidney function test passes smoothly
love and hugs xxx
What is a community champ?
so sorry to hear you’ve got this horrible disease but I’m pleased to know I’ve given you some hope.
hope you manage to tolerate your treatment with little side effects.
Thanks, daloni. I was definitely glad to find the group.
Kidney test went well (though I don't know the results).
Then I signed the papers for the chemo. It's all going so fast...!
Now waiting for first chemo appt.....
Thank you so much. Take care x
Hope all goes well with your chemo. No one can ever say it is easy but you will get through it and it's not all bad.
Remember people are here to help and many people have tips for getting through side effects. Sometimes it feels better just to share and know someone understands.
Thinking of you
Glad to hear the kidney test passed uneventfully. It can feel like a whirlwind at first and I hope you’ll soon settle into more of a routine soon.
There is a lot of experience of chemo in this community. I’m on my third lot currently. When you know what you’re getting, why not start a new discussion to see what experiences people have to share?
Thank you so much for your support. I'll be in touch when the side effects come in...
Hi Clare, I really liked your use of 'expiry date'. I think I will use it myself to lighten things up when talking to family. Karen. Xxx
I've just read your profile - what a shock that must have been for you - I'm so sorry. Glad you're feeling more positive about the chemo. It isn't nice but it is manageable - take all the drugs they give you to cope with it (steroids ect, anti sickness - dr friend of mine always says, with sickness it's easier to prevent it then try and pull it back once it's started) and be kind to yourself - rest when you need to, sofa days are absolutely part of the package.
Thinking of you as you come to terms with all this.
Karen - I often use flippant terms around friends ect, some cope, some don't. I like it too! We all have an expiry date, it's just we have a sharper focus on ours! Hope you're having a good weekend.
Thanks a lot for your reply, Gobaith. Actually, my sister had breast cancer 10 years ago and the medication she was given to stop the side-effects was what turned out to make her sick... :-( I think it depends on what they give you as chemo.
One thing I gather from reading online is that everyone's got their own special journey. How very "special"... :-(
Have had a lovely afternoon with my son. All worries forgotten for the day. Hope you have a good day tomorrow. Xxx
Of course I asked - median life expectancy for me is 5 years, but early chemo and radio may add a couple years to that. That gets me to 69, so I suppose I shouldn't complain (but I will). The biggest problem is with the loss of stamina due to the hormone treatment. I really hate having to walk slowly and pace myself, I may look like an old man but between my ears I'm still under 30.
On my initial consultation the oncologist was pretty vague about an expiry date (or is it best before?) partly due, I expect, to not knowing what targeted therapy I would be on. Afatinib has an a mean of 10 months, whilst Osimertinib indications were a mean of 16 months. With a fair wind behind me, and a hint of good luck, it could be 3 - 5 years. Statistically a long shot (less than 3% survive that long), but it is something to aspire to.
As an aside I was most fortunate to get prescribed Osimertinib that is funded by my company private health insurance scheme for 12 months (not available on the NHS as a Stage 1 treatment). Not sure what will happen in March next year when funding stops.
Set yourself stretched goals - aim for the moon and miss you get nowhere, but aim for the stars and, if you miss, you will hit the moon (or further).
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