At home with Stage 4 NSCLC with brain mets. Palliative care only. At first I was ok just trying to make the most of each day but finding it harder and harder to do this.
Thinking about how long I’ve got , how fast I’ll deteriorate and how death will be
Don’t know how to lift myself out of this
Dear Debs0768So sorry to hear of your prognosis, only those who have experienced where you are truly know how you feel and hope you find support and encouragement on the forum. It can feel like a lonely place where you are but you are not alone in this and surround yourself with people who can support you.
No-one can know how long any of us have, even the doctors often get it wrong. If you are needing help around the house or shopping do let your GP know to have some practical support in place.
Palliative care means there is no treatment available, however it does not mean that you are immediately at end of life, perhaps consider using the time you have to make the most of your life.
You should have been referred to the palliative care team, they are not just for those at end of life but for anyone with a life limiting illness. Just getting to know them and make contact can be a huge support and they can advise and provide what medical, nursing or practical support that may be helpful for you.
If you have not been referred to them you can ask your GP to do this or your specialist.
Some find it helpful to make a list of all the things they would like to do or are practical to do, involve your friends and family in this if you are able to. It may be useful to use your time if you have any hobbies or take up a new one. This could include starting a journal, draw or paint how you feel, something that is personal to you or what could be a distraction from your thoughts.
We provide a service called 'keep in touch' where one of our dedicated team members can contact you every 2 weeks to see how you are doing, this can be either by email or telephone, if you are interested you can register through this link: roycastle.org/covid-19/info...
Your anxiety is understandable for how the future will be for you and Macmillan support online provide some useful information on where to find support at end of life if you are interested in looking at this: macmillan.org.uk/cancer-inf...
If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Kindest regards
The Roy Castle Support Team
I am really sorry to hear this and being well into ‘borrowed time’ myself I can appreciate how challenging some days can be. Also how hard it can be to stop your mind going into some dark places sometimes. I don’t think lockdown helps as it limits opportunities to do things we enjoy even further. As well as stopping us seeing family and friends. However I find there is a lot available online and many of the activities I would normally attend I now do via zoom. That is great for keeping in touch with others too. There are some great offers for learning new skills online that are worth exploring and I find reading a great form of escape. I don’t know how mobile you are or how breathless you get but I have found Pilates very beneficial from a mindful perspective and also in helping with breathing, flexibility and posture. I am not very creative but I know some people get a lot of pleasure from arts and crafts, which again are beneficial from a mindful perspective, as well as the sense of achievement in whatever is created. Being able to get out in the fresh air is good for lifting spirits as well. Apologies if you are already doing a lot of the foregoing.
I don’t know if it is the case in all areas, but our local Hospice offers psychological support to those with life limiting illnesses and their families, so it may be worth enquiring about this as you may gain some helpful coping strategies.
If you are having trouble sleeping, I have found the Calm App pretty good. There are sleep meditations and sleep stories on that. I quite often fall asleep with Harry Styles!😂
Most of all you are not alone. As well as your family and friends those of us here on the forum support and encourage each other and are here for you.
Sending love, best wishes and positive thoughts. 💕xx
Lots of good advice already given. I reckon we're allowed to have low times but hopefully one of the suggestions given will help you come through and renew your determination to make the most of the time you've got. Wishing you all the best x
Hi Debs
Like the others have said, Palliative does not mean end of life. I don’t like the word as you think end of life but it’s there to give you quality of life as it sounds like non curative (same here). I have counselling through the Hospice which really helps to offload. I have been offered complementary therapies. I have a nurse check in on me every few weeks. They prescribed anti - depressants at the beginning as I cried all the time. 1 year down I feel more in control of my life. Walk, do things around the house, generally keep busy but also rest when I need it. I would say yes to everything offered and if you don’t like it you can stop with it. It’s worth a try. Best of luck and wishes to you xx
Thanks Daisyflower and all who replied. It means a lot
I can’t offer any suggestions that haven’t already been given so I’ll just send you a big virtual hug xxx
Hi Debs so sorry to hear your news. I can only suggest you take each day at a time and try to do things you've always wanted to do but never found time. Also try to find a good friend you can confide in and talk. My love and thoughts are with you ❤❤
Scan verdict, reason to be positive?! 
Stage 4 ALK positive Mutation - on Crizotinib
Early days and really scared
Newbie looking for advice 
