I’m struggling to live with my terminal diagnosis

Dear

thank you for your post, it’s very brave of you to reach out for support at this difficult time of your life. May I ask if you are still receiving active treatment or has your case been transferred to palliative care services. I am personally in the final stages of my blood cancer having been diagnosed as terminal 19 months ago so understand what you are going through. If you feel comfortable I would like to hear more about your journey and current status, although this is called the end of life group it’s really about helping each live a good life right till the very end.

HI Jonty

Thank you so much for reaching out,

I've had bowel cancer for three years and after some initial successful treatment, it moved to my liver quite quickly after my last series of chemo, I don't want anymore chemo as it's very unlikely to work and I don't want any more poison in my body, had a scan a couple of weeks ago which said all tumours were growing (unhelpfully onc said - we didn't measure them we can see they are growing)

I feel like I"m dragging the grim reaper around with me, I"m on new anti depressants which hopefully will help ease things soon, cos I really do want to live a good life for as long as I've got, my onc reckons months not years, who really knows.

I"m a Buddhist so that helps, but not when you're in the hell realms of depression, and I'm taking off for a monastary in Scotland next week, hopefully that will refresh me somehow. xxx

oh, and yes , I'm on palliative care now, got a lovely macmillan nurse, I have a medicine chest of pain relief which so far I dont need

Dear

ive no doubt the last three years have been extremely stressful for you especially as there was probably a high degree of optimism in the beginning, in my case there never was any chance of a cure so I’ve had a long time to get used to my current situation. I too have a community Macmillan nurse who is fantastic, I also attend the crafting class at my local hospice once a week which lifts my spirits as they are a great bunch of people who despite our situation provide each other with lots of support and laughter. I think the idea of a retreat sounds a good idea, you will be able to clear your head away from the noise of everyday life and think about how you want to deal with what is going to happen to you. As for prognosis this is an added complication, doctors no longer seem willing or able to give you a definitive timeline and rely on statistics, but we are all individuals and not a statistic. I have regular contact with a palliative care doctor at my local hospital, we have very frank conversation about my situation which I find very useful and he is a great advocate for me if I am admitted to hospital for any reason. You need to give yourself time to adjust and try not to expect too much in the beginning, it’s a cliche but true, take one day at a time, we are here to support you.

Dear

I'm so, so sorry to hear that you're struggling, but it's understandable and part of the grieving process I think we all go through.

I was diagnosed with incurable cancer in March 18 and terminal a year later because of disease progression. I've been referred to the local hospice and am on palliative treatment.

I took me a long time to process all the information and implications around the diagnosis, and to feel that I was living with cancer rather than dying of cancer.

I went over and over everything in my mind until the language around all of this lost it's shock factor.

I identified the things that made me the most anxious and sad and decided to let go of the things I have no control over.

I read a couple a few books by people in a similar position and started to put some practical things in place. I said 'yes' to every invitation that came my way including some things I would normally avoid.

The single most useful thing I've done is join this community. The practical advice, shared experiences not just of treatment but of hopes and fears, and the moral and emotional support have been a life line. There's so much wisdom and compassion here.

You will be the life and soul of the party again, you're just a much needed break. Your illness won't  define you. It just takes time and it's a work in progress for everyone. You have to be your own best friend.

xx

Hi Tinalay,

Could you tell me the names of the books you mentiioned?

2 books by Kate Granger who started the 'hello my name is' campaign. She was a doctor and a terminally ill cancer patient. I experienced first hand the positive impact her campaign made to our treatment.

When Breath Becomes Air by Paul Kalanithi, also a doctor.

On smaller dogs and larger life issues by Kate Figes

Thanks so much Tinalay xx