Advanced Lung Cancer

Hi Melg, thanks for replying, it is really considerate of you. It helps me look at all my options before I get too ill, that way I might be able to make more sensible choices.

Knead never diagnosed with any immune system disease, I was told it was all in my head. But since the cancer diagnosis, they said my immune problems stop some types of treatment. I don't understand how they can now say that the immune problems which were a figment of my imagination now really exist and rule out some treatments.

How long was your dad ill before diagnosis?

He is lucky to have your absolute support and that will be of great comfort to him. You are a real caring angel for him.

Warm wishes

Bob

Hi Melg, I’m so sorry to hear about your dad. I’m only a little older than you, I’m 36, it feels such a responsibility doesn’t it. I’m sorry that things are so tough, just want to send you some love and solidarity.

My dad has a biopsy yesterday and they drained the fluid from his lungs. He’s mostly spaced out on oramorph but anyway he gets his results at the end of next week and that’s when I think they decide on what palliative chemo. I live 2 and a half hours away so I’m frantically trying to organise my children so that I can get over for when/if he starts chemo.

I spoke to his palliative nurse and she was great, just talking to someone helped as day to day my head is all over the place and I feel lost in the unknown. You certainly learn who your friends are at times like this. Some haven’t been in touch at all. She said he’ll be offered up to 3 rounds but obviously scan results after each will determine if he has another and whether it’s better to weigh up having no treatment and trying to live the time he has Vs just being too ill. She said if the chemo stalls it or shrinks it a bit, it might give an extra month or two but obviously they can never really say.

I totally get it, I don’t think I woulda settled if I’d have not come n stayed I don’t think my dad woulda survived by himself at all, there r times iv felt as he sleeps so much, that I’m constanlty waking him in intervals for medications drinks n meals, it’s awful coz in one hand ya wants to leave em sleeping as they’re settled but in next hand you’ve got to keep on top with all pain meds n stuff, yes n talking bout friends mine have all been brill with me more than anything it’s a certain family that has shocked me as thought she’s be right there supporting her brother n me her niece, went to visit him once in hospital for 5 mins, ring a couple

of times n it’s always I can’t come coz iv got this n n always excuses that has really bothered me load, it’s an awful feeling, but in other hand everyone handles these situations differently n may not be able to handle it or for instance some of ya friends just may feel uncomfortable as they don’t know what to say so could be avoiding the situation it’s totally rubbish I know, Hope ya Dad gets some good newsxxx my dad’s still really considering wether Or  not to stop treatment still at moment,  he’s more confused each day he’s woke me at 2am for some pain relief, n said he was dreaming about Wigan, bless him then said a Kardashian’s just walked past him he was still half n half, he’s just settled back off nowxxx I hope you get the support you need so you can focus on your dad, like you want to think it’ll put you at ease knowing someone there as treatement startsxxx

Sounds like you are doing a fantastic job Melg. You seem so on top of everything. Was your dad ill for long before diagnosis. I was ill for a few years but things seem to be speeding up now.

I hope you get some rest too.

Bob

Hi Sparrow, I’m so sorry to read about your Dad. I’m the lung cancer patient but had been a carer for my Mum who was diagnosed with bile duct cancer...quite rare 14 years ago and no chemo/radio available that would help. Her prognosis was 6 months and they were exactly right. 

Between my Dad and I we cared for her at home and I will second what the other lady said about being the Daughter you always have been. I too never saw my Mum cry yet she must have been devastated and on my night shifts I crept outside to weep so she wouldn’t see or hear me. We stayed the people we had always been to each other and now, looking back I’m so glad of that because it means the cancer didn’t rob us of our relationship and the people we had always been. 

‘That’s my only tip I’m afraid, it’s very difficult to bear but there is no other choice. You will always know that you did your utmost best for your beloved Dad. Sending hugs xx

Anniekins, Thank you for your message, I am very sorry for the loss of your mum xx

I thought it was a great tip and I felt some comfort in the knowledge of what might help. When I talk to him we talk about football, the horses etc and he’s always cracking jokes. But this last couple of days he’s been in too much pain to talk on the phone. I’m going over at the weekend to stay for a while. I will travel back & forth as I have a partner and 2 children.

I’m just so angry all the time and I very rarely feel angry. I’m angry with stupid posts friends put on social media, I’m angry that they ask how I am and then proceed to dump all their problems on me when I just have no head space for it. I feel so alone but have to be strong. It’s like I’m angry with people’s self obsessed lives because they don’t realise what bad stuff is going on outside of their ego. I don’t know. I’m not usually like this, I normally let it go over my head but I’m just so cross all the time. Thank you to everyone whose posted, I really appreciate it xx

This is a tough time for you and reading about trivial problems is bound to make you feel angry. When I was diagnosed with lung cancer I came off social media for a few months, it was a relief not to read banal posts and barely anyone messaged me to say how u doing so I didn’t miss much!

Forget these people for a while and concentrate on your loved ones. I hope at the weekend your Dad has the pain under control, that is something that can definitely be sorted out. Talking of football and horses made me smile remembering my Dad, ask him if he’s got any tips! Hope you spend a good weekend together xx

Hi Sparrow,

I'm sorry you've found yourself here but it's such a helpful group and I really don't check in as often as I'd like.  My mum has advanced incurable lung cancer too but we have never been given time frames of which I'm glad about because I think in many ways it stops us focussing on the illness. 

She has NSCLC which is in the lymph nodes in the chest so like your dad she couldn't have surgery (which was a complete kicker when they told her had the nodes not been involved, the tumour was in the perfect place for surgery).  She was diagnosed in July 2017 and so far has had pembrolizumab, cisplatin/pemetrexed, radiotherapy and erlotinib.  She just had a biopsy six weeks ago and saw the oncologist yesterday who told her they hadn't managed to get a decent sample to pick up any cancer cells to check for another mutation which would make her eligible for another oral chemo so at the moment they're leaving her be until things start to progress.

I know what you mean about feeling they're invincible, I'm the same age as you and my mum is only 57 and she was so fit and healthy.  I've found the best way to support her is to just be there and carry on as normal as much as possible.  We go out and do regular things and just slow down when she needs it.  I think for us, the sense of normality helps the most but everyone is different. 

Try to take time to focus on yourself too, you're also going through turmoil emotionally and you need to allow yourself a bit of down time.

Take care x