Hi everyone

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Hi just wanted to say hello, and introduce myself. I’m 44, married with 14 and 11 year old children.

I found out last week that the salivary gland cancer I had last year, Adenoid cystic carcinoma, had spread as multiple tumours across my lungs.

Although this is a slow growing cancer, the fact of being slow growing means it doesn’t respond to conventional treatments, they said chemo for example has a 5% response rate, so it isn’t worth the side effects at moment for the low chance of working. There are clinical trials but I need one tumour over 1cm which none of the 9 are yet, though one is close, so I’m just basically sat waiting. It’s so odd knowing I’m going to die soon, but I feel fine at the moment and I have these things taking over my lungs whilst I’m not doing anything.

Like everyone else it just feels devastating, and even with my family around I feel so incredibly alone, knowing I’m the one causing all their pain and anguish, and will be leaving them when I don’t want to. Im also beginning to feel extremely, and irrationally I know, angry.

So sorry for the rant, there may be more coming! I hope you are all keeping as well as you can be in this situation

thanks

Shadders 11 months ago

Hi Bluesky

You must have so many things going round in your head right now. The trials sound positive, so hold onto that. You have a right to feel angry, I think we all go through that at some point. I think it’s a sort of grief as you are losing the way of life you’d thought you were going to have moving forward with children growing up and away. I myself went through a period of intense sadness. My cancer is hopefully responding (scans are inconclusive at the moment), but I still mourn my lost life. I try and stay focused on all the positives in my life, noticing nature, seasons, and taking advantage of the extra time I have on my hands after retiring due to ill health. Are you still working?
Jac x

AustinT 11 months ago

Hi Bluesky. Im similar in age and my kids are similar age too.. Im 48 and the kids are 16 and 13.

Like you I feel awful for the pain and anguish I am putting them through.

Im not feeling anger (at the moment... it may come) but Ive been through all the emotions.

Feel free to rant, I feel pretty confident that we in this club are allowed to rant as much as we want. Its only fair!

I hope your treatment goes ok and you have plenty of time with your family.

I know this is just a cliche... but I try to just take every moment as it comes. Some days (yesterday for example) I felt rubbish and did virtually nothing, other than reading, watching TV and relaxing. The day before through I had been out and about. Walked the dogs, spent time with family and even went to some shops. Some days are definitely better than others.

sistermoon 11 months ago

Hi Bluesky

Welcome to the group. No one would choose to join but we make the best of the situation we are in. Everyone is supportive and understanding, as we know how each other feels as we are all in the same situation. I read a book recently and she described herself as being gravely ill but weirdly well. I think it sums it up.

I think of my life as before cancer and this new life. I have taken ill health retirement so I have time to be able to do the things I like doing, but who knows for how long. I have aggressive cancer (my profile is on if you'd like to read, just click on my username) so it responds to treatment better but my only line of treatment is chemo. So it works until it doesn't work and that's it. At present I have been stable for 1 year.

It may be a bit soon to think about but counselling may help, it helped me. Just to be able to talk it through with someone that is not involved. I hope you are suitable for a trial soon.

A x

Maninbath 11 months ago

Hi Bluesky. Yeah, it’s a bit weird feeling fine but knowing there’s something inside that’s going to kill you. I have secondary cancer of the lymphatic system and my oncologist has told me that whilst the cancer is contained within my lymphatic system I won’t actually feel unwell! Took a while to get my head round that; not helped by the fact that on the outside I look a picture of health.

We have all felt angry at being members of this club but for me anger is wasted energy. Over time I have become accepting of my situation and am now able to channel my energy into positive action, which, perhaps strangely, includes bullet points for my eulogy and a ‘When I’m Gone’ playlist for my family.

Your emotional state will bounce up and down, just know we’re all here to offer whatever support we can.

Best wishes.

Maninbath