Stage Four lung cancer ?

Hello Geoff,

My situation is a bit similar to yours. I was diagnosed with stage 4 ovarian cancer in June last year and told in the autumn that it is both incurable and untreatable. I didn't want a very specific prediction of life expectancy but I asked if it was more or less than 12 months and was told less. I still feel more or less ok although that is partly thanks to the steroids I'm taking. My palliative care nurse says that for as long as I feel ok I don't need to worry about anything and I will know when things start to deteriorate. I'm having counselling from my local cancer charity to help me maintain a positive mindset while also facing up to reality. I don't want to be in denial about the fact I'm dying and have it come as a terrible shock later. 

Sorry I don't have much helpful advice as I'm struggling to navigate this path myself but just wanted to say hello as it seems most people here are receiving treatment to reduce/control their cancer even if it is incurable. It feels a bit lonely to have been more or less abandoned by the NHS with no one else in the same boat. 

Sarah

I'm currently in reasonable shape on no treatment with a less than one year to live prognosis. I too am now getting support from my local cancer care centre. Apart from scans every three months with appointments for results I have no contact with my consultant or liaison nurse unless I contact them. They are helpful if I do contact them though.

The things I struggle with are:

1. Accepting the diagnosis when I'm physically coping well
2. Supporting my children, husband, parents, extended family and friends to accept the diagnosis and to take me as they find me on a day to day basis

It has taken me a while, but I am now planning for the near future, booking holidays and concerts etc. It is nice to have things to look forward to, even if I don't necessarily believe they will happen. I had sorted out my will and lasting powers of attorney for health and finance before my diagnosis, I'm glad I didn't do it with my prognosis looming! 

My advice would be to eat well whilst you are enjoying eating, make sure your affairs are in order, plan some nice things with people you want to be with, or on your own, try some of Rainies art projects. 

Best wishes 

Hi Sal,

Thanks for taking the time to reply.

It's a strange situation to be in, isn't it. I think that, apart from talking to my counsellor, which has been really helpful, something that has helped me to accept my diagnosis is the fact that my health has gone up and down a bit. I had a cold back in November which wiped out my energy for weeks, and I also get fluid building up in my abdomen, which caused terrible nausea and tiredness before I started on the steroids. So I have had plenty of moments where I've thought 'is this the beginning of the end?' because I felt I was barely managing to look after myself at home.

Anyway, I'm definitely feeling much better with the steroids, eating quite well, and even enjoying a bit of cooking again. I'm lucky that my local cancer charity provides swimming sessions once a week in a lovely warm pool at a private gym, and I have also just signed up for some Saturday morning workshops run by a local potter, so I get to do two things that I really loved before I got ill. I've also taken a leap of faith and booked a short residential pottery course down in Sussex for the end of April, so I have something to look forward to.

My friends and sister have all been amazing at being supportive and just taking me as they find me, so if we have plans I feel able to say 'actually I'm not up to that today' and they accept it without any fuss. My 82 year old mother is my biggest worry. She's a very difficult and negative person. I haven't told her my cancer is terminal because I think she doesn't need to live with the worry about that now when I still hopefully have months (perhaps longer) left, but also because I simply can't cope with her drama and negativity.

I did ask if I would receive any kind of scans or monitoring after they decided my cancer was untreatable but I was told there was no point, and I recently learned from a radiology nurse who was doing my fluid drain that I have been completely discharged from oncology so there's no one to write my referral letters for the drains. So I do sometimes feel as if the NHS has just abandoned me. I didn't even receive a letter from oncology to let me know. Anyway, I will try not to dwell on that.

Wishing you all the best. Hope your health continues to hold up so you can enjoy all the things you've planned.

Sarah

wow i can't believe that they just discharged you. No wonder you feel like crap. Cannot understand that. So who is in charge of your medical issues now?? 

Hi AidB good to hear the steroids are helping. A pottery class in Sussex sounds great, that is something to look forward too.

If you have been discharged from oncology then your care goes back to your GP. If you haven’t heard anything from your GP I would give them a call to clarify this for you x 

Hi Geoff, hope you are doing ok. I have answered your post over on the lung group, but good to see you here too x 

THANKS EVERYONE for your kind and helpful replies.

I read everyone ! 

Geoff x

Gosh, I'm shocked by your treatment, I was told that once/if the oncologists felt they could do no more good I would be referred to the palliative care physicians for ongoing care. I do contact my oncologists secretary relativly regularly regarding letters as they often forget to copy me in, but you would expect to be told if you were being discharged. I am sorry your experience has been so shoddy. I would complain, though I understand if you don't have the headspace or energy to do so.

Hugs

Hi Sarah, sorry to hear about your situation and lack of communication and empathy from the oncologist. I'm in Scotland but I'm sure the same rules apply wherever you are in the UK. Your GP is primarily responsible for your healthcare. I had mentioned to my oncologist twice last year that my GP had never contacted me to offer support after I was diagnosed as terminal. After I spoke to her on the phone in November she emailed the GP surgery and I think she must have worded things strongly. Although I didn't get a straight apology from a doctor, I was told that I seemed to have slipped through the net. Since then they have been brilliant, I've been to two appointments since the oncologist put me on palliative care and had a few phonecalls to check on me. I've had my " Just in case box ' delivered. I've had a visit from a Marie Curie nurse and doctor to see how I was, and getting another visit from the Marie Curie nurse next Thursday. So I would suggest calling your GP and tell them about your situation and concerns, they should give you the help and support you need. Palliative care where I am is a team effort between the District nurses, Macmillan nurses, Marie Curie and Saint Columbus hospice. Good luck and kind regards Frank.P.S. my oncologist didn't discharge me but said she probably wouldn't need to see me again but I could contact her via her secretary if I had any questions.

Sarah,

You sound like a very strong brave lady. What do you do to keep your mind as positive as possible? I am in such a dark place. I agree with your thinking which seems to be about accepting your prognosis whilst trying to be positive and enjoy what you can but I just can't seem to get there. 

Sara