Metastatic in lung

Hi

Welcome to our community although I am so sorry you have had cause to join. You ask if anyone else has experienced this sense of feeling lost. The answer is a big, fat yes. 

I was told I my cancer was back and incurable in March of 2016 and I do remember how hard it was. It was like a shutter had come down on my life. People told me that anyone could get run over by a bus, as if that was some kind of comfort. I spent a long time dying from cancer until one day I realised that actually no, I was living with cancer. It made all the difference. 

I did have to go through a grieving process for the life I thought I would have before I got there. I needed to work through my anger, sadness, the need to bargain (if I can see my daughter through her GCSEs...if I can be there at my niece's wedding) and other emotions before I could finally come to a place of calm and peace. I used any and all resources available. Counselling at my local hospice was very helpful as was (is) meditation. I used yoga, massage to help me release the trauma I carried in my body after so much treatment. I read widely about death and dying, although I read slowly as it was hard to do.

Being a part of this community remains a huge part of my support. It is a place where people really understand. There is no judgement, just kindness. It is a place I can let off steam or think through a problem. Everyone rallies round when one of our number is unwell. I am amazed at the depth of friendship I have with people I have never met. 

I will stop now. I am in danger of going off on one. I am in limbo too - you might want to have a look at the discussion In Limbo to see how others are getting on with this. It is an appalling situation to be in but my view is that there is absolutely nothing I can do about it so I might as well just get on with enjoying this day in front of me. 

I hope this is helpful and maybe the start of a bigger conversation 

xx

Thank you, means alot.  Just your first paragraph summed up some of my thoughts.  Think i’ve got in my head im dying so thats it, got some work to do it seems.

Hi

You are very welcome. I am glad to be able to help in just this small way.

One idea that is currently emerging is to think not of “incurable cancer”, which sounds so bleak, but instead of cancer that is “treatable but not curable”. I have found it a much more hopeful way to think, and so have my daughters. 

It is a change that’s being led by Macmillan. Some oncologists are already using the term but not all. And of course in the current limbo it’s maybe a double edged sword - we are treatable but caht get the treatment! 

I will leave it with you 

xx

Hi Mrs H72, sorry you find yourself here! I was diagnosed with lung cancer o Xmas eve, due to start chemo February this year with intent to cure, oncologist asked to see me before treatment.... When she had gone back to arrange all treatment dates etc she went over CT and MRI scan results and noticed cancer in my femur.... She then said she was sorry I was now incurable, the whole bum fell out of my world.... How do you process that, I was geared up and ready for the fight of my life and endure chemo. Chemo no longer an option but have started immunotherapy treatment. I was told that same day I had a year or less.... I don't have children, which due to my circumstances I regard as lucky, but can't for the life of me understand the pain you must be going through. I'm angry with the world, I'm 42, my hubby and I had plans. I try to take each day as it comes and still try to make plans for after February next year. At the moment due to corona virus I feel I'm missing out on creating memories for family and friends but I'm determined and try to stay strong. Sometimes you just have to let it out tho. I have found gin helps me (joke). I wish you all the best. Speak to your local macmillan centre, mine has been my saviour. And the guys on here are just brilliant, we all care about each other. X

• Hi, thank you for writing.  Lifes a bitch! Just been in touch with macmillan going to phone again next week to create like an account or something like that so I don’t have to keep going through it all again.  If I wasn’t in pain most of the time or tired or both it wouldn’t be too bad, well apart from shielding, just not knowing what to expect I suppose.  Shame I don’t like gin.

Hi Welcome to this terrific group of friendship and support. I'm sorry you find yourself here but Daloni has said what I would have. I was given 5-7 months with stage4 Malignant Melanoma which had started with my leg then spread to chest, abdomen, pelvis. Then the PET scan showed a tumour eating through my arm and within two or so days I had a pin inserted between my shoulder and elbow, to stop me loosing the use of my arm. At first I wondered why they were bothering to operate when the prognosis was so bleak, then I thought it would be difficult for my husband if I could only use one arm, no matter for how long, so had the op. For the first while all  I thought of was funerals and what I'd miss! Then it hit me one day just as Daloni said, whatever time I had left I was wasting with all the What if's, the oncologist had said the word terminal, not incurable and this was the word that stuck in my brain. Now I don't think they even say this to patients, they say incurable which is a lot better. Even better than that I was put on a Trial drug that actually worked for me. Now I certainly am Living with incurable cancer that treatment has slowed to a halt meantime. I no longer think of myself as dying! Which is a huge leap. It's not been easy but if you work at it I'm sure you will reap the benefits. Also have a look at 3 Good Things, I think that's the name of the post but I'm sure Daloni can let you know the right name if I'm wrong. You did say "life's a bitch" the last part of that is "& then you die"! However no one can give you an exact date so enjoy the life you have for as long as you can. I hope you will find being part of this group can help! We are all in the same boat but some of us have been here a bit longer and are really lucky!

Stay safe,

 Hi, I just wanted to say welcome to the group as I don't think we have chatted before so hopefully we can put that right soon. I just wanted to say good luck with the immunotherapy, I know it has worked well for a lot of people here and hope it works well for you too. You say you are missing out on making memories, well you are making them every day with your husband  and this Lockdown won't last forever although sometimes it's hard to imagine but in England it has slowly started already. I'm in Scotland so we have another two weeks at least before the strict lockdown is slightly altered but it's still something to look forward to! We had a game of Frustration yesterday on Whatsapp on our mobiles with our grandchildren and they had to move our pieces as well as their own. It didn't stop them from laughing when my husband and I were sent back to the starting position. They laughed all the way through! That was a memory I won't forget and I don't think they will either. Daloni and family had an online quiz with adults and grown up children. Just try to think of something you could do with friends, like Charades. I know it sounds daft but everyone enjoys it! Good luck!

Hi

Pain is awful and colours everything. I’ve been living with serious pain over the last year and my GP and the hospice team have helped me keep on top of it.

It was when I began to experience cancer-related pain that I began to understand why this is such a feared disease. These days we have modern, synthetic opiates that help bring it under control, but in days gone past when morphine was the only option and came with the cost of destroying your liver or kidneys, well as I say I begin to understand the fear that cancer invokes.

I’d be the last person to say that pain can always be controlled. I know full well they can’t. But certainly my approach has been to tackle pain head on and luckily I’ve had brilliant GP and others behind me to help me with that. I really hope you have too and that you can get this addressed.

xx

I agree to me pain is the worst thing I have had with my disease. It is good I have been able to cope with the help of drugs 

Hi Anndanv, thank you for checking in with me, I too live in Scotland and while lock down is frustrating, I do understand the need for it. I sometimes worry about how much time I have left, and see it as missing time with my sisters and twin brother. It's scary being told you have less than a year to live but I read your profile, my god, you have been through the mill and your positivity amazes me. I'm hoping to go on holiday Nov time to the Maldives (bucket list) but I'm worried about finding the right insurance given my prognosis, you appear to be well travelled, can you suggest an insurance company please? As I said, thank you again for replying to me. X