Last October my husband of 30+ years went out to play table tennis and never came back. Long story short, an undiagnosed heart condition. Then 4 days after his funeral I was told the long Covid I thought I was suffering from was in fact advanced and incurable lung cancer. Brain and hip metastasis have since been revealed.
Last week I was told that the trail I thought may be suitable was not, my body would not stand it , this I know.
So currently Im here in Leeds with my son who came home on the night of John’s death and has tried to support with the help of friends.
I feel like a bit of a fraud as I am electing not to have any more treatment, just palliative care. I need peace now.
Can anybody identify with any of the above?
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So very sorry for the sudden loss of your husband, and now the shock of your own diagnosis. This must be extremely difficult and distressing for you both as you are both still grieving and perhaps impact on any choices you make.
It is a very personal decision on whether to pursue treatment or not and it can depend on the stage of your cancer, and to weigh up the quality of life versus extension of life.
If the clinical trial was the only treatment choice you were given, then you are certainly not being a fraud if there are no other treatment options. Again if there were, everyone has a choice to accept the treatment or enjoy what quality of life they have left.
Lung cancer treatments have improved in the past 10 years with new treatments of targeted therapies and immunotherapies, these are dependent on certain cell mutations/proteins being present. They are often used for those who have advanced lung cancer and for some can provide extension of life.
None of our feelings are wrong , we all cope with things differently and they need no explanation You are not alone and we hope you hear from others in the forum who will truly understand and provide support and encouragement.
If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Thanks. I would have made the same choice of John was still here. Apparently my cancer is rare and the local oncologist felt the ‘usual’ treatment would be too much of a blunt instrument. Indeed it wouldn’t have picked up the brain metastasis.Is anyone else going down the wanting a peaceful death line ?
There are several on lung cancer online groups and I still have on my bookshelf a book called 'there's something I've been dying to tell you' by Lynda Bellingham who decided to call a halt to her aggressive treatment for another cancer having watched/cared for her sister with lung cancer some years earlier. We all have to make our own decisions and it can be a very difficult time. This information piece may help - deciding not to have active treatment is not the same as refusing all treatment and your care team should also still provide support for symptom relief so it's important that your wishes on that are known by them and your GP and family..... thinking of you....
Thankyou so much JanetteR57. My son aged 30 is supportive of my choices ( such as they are) as are my friends. It’s my brother aged 62 and it’s coming from a ‘fix or forget it ground’ , he doesn’t do feelings and as a retired mental health counsellor, that’s what I do!
Hi, I can't begin to imagine what you and your family are feeling but I just want to say I admire your strength and want for inner peace that you most certainly deserve. My thoughts and prayers are with you and your family and if you need an ear to bend or even a chat please know I am here anytime 🙏
My father, many years ago now was diagnosed with stomach cancer. He had his stomach removed and this was followed up by chemo as a palliative treatment. After the first round he decided to stop as the side effects were impacting his quality of life too much. We all enjoyed the last months and made the most of our time. My father ate what he fancied and for the first time in my life we shared many thoughts about the mystery of of life and death. We were closer than we had ever been before. I cherish those memories as we saw each other as people with experiences and understandings that I didn’t think would ever be possible. He died peacefully at home on a Monday evening.
I fully support you in your decision and say well done for sharing it on this forum.
Thank you so much for sharing your experience.The oxygen arrived last night, it will take some tinkering with. No more smelly candles!😰but my son and a friend were rubbing me into sleep . I woke at stupid o clock this morning an now I’m trying to settle in again until I meet up with some friends fora pub lunch.
My son is away this weekend for a uni reunion and part of me is hoping I’ll die then, I so want it to Beas painless for him as possible.
Thanks everyone for your support, this is such a wonderful support for me x
What a brave post. I admire your strength in knowing what you want to do with regards to end of life. My husband of 35 years died last year after enduring a horrendous course of chemo and radiotherapy which drastically reduced his quality of life. He did this because he desperately wanted to live but in hindsight it added to his suffering and watching him reduced to this state was one of the hardest things I will ever have to do. The hospice provided peace at the end. So, I salute your bravery and acceptance at this time
My condolences to you on the loss of your husband, and now this, bless you.
I was diagnosed April 2021 with lung cancer and was very poorly all last Spring. It turns out after tests I was suitable for Tagrisso and I’ve got quality of life back at the moment, (this is a target treatment one a day tablet and I’ve found has only a few side effects).
I’m 68 and my philosophy is the same as yours I will make exactly the same choice as you should things spread, I know I couldn’t tolerate harsh treatments. I’m sure like you I will be apprehensive but you have the love and support of your lovely son. Hopefully when you get some help with your symptoms you will have some good days to enjoy and who knows for how long.
We must all make our own choices if I was younger I’m sure my mindset would be different.
Sending you love and warmest thoughts brave lady, I am sure you will be cared for beautifully and I wish you peace,
You have so much strength and inspiration after what you've been through and a supportive son.
I understand where your coming from thinking about no treatment. I have Stage 4 NSCLC that's not curable. I'm ok at the moment having chemotherapy but I do think what my decision will be if I get worse. After saying that there are so many on this forum who have live long healthy lives. There are new treatments coming along all the time.
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Still in Remission
my 58 y/o partner diagnosed with non small cell lung cancer in mediastinum with lymph node involvement and bone mets
Worried and feeling sad
