Mums lung cancer

Hi Rachel - I'm so sorry that you and your family find yourselves here. It's such a horrible, unbelievable shock and takes a good while to accept this new reality I think. 

For me - my mum has advanced bladder cancer with lung mets - she was diagnosed with a bladder tumour after a cystoscopy in September and it took a month, which was an emotional roller coaster, before treatment started. First we found out it had spread, then she had a biopsy to grade it, plus a painful lung biopsy as they couldn't be 100% sure, we were told she would be having major surgery, then we were told they had decided to treat with chemo instead (palliative) and she was also given a prognosis of about 13 months - so it was up, down, up, down and was mentally exhausting. I live 2 hours away and my dad isn't in the best of health really either. 

She started treatment 3 weeks ago and although she feels rough for about 4 days after chemo, she picks right up after that and my dad said that he has noticed that her bladder symptoms seem to be calming down (she had constant urgency) and her cough is going. So the treatment so far seems to be working, not curing it, but symptom control basically and to be honest, I think once all the investigations and the 'what ifs' that come with that have settled down and you're given a proper treatment plan and are fully informed of what's going on - it's better (for want of a better way of putting it) than the unknown. We know where we are for the moment. 

I'm really hoping for your mum that they get her on treatment as soon as possible and you start to see an improvement from her going downhill and you can all breathe for a bit. 

Hugs x 

Rachel

The not knowing is by far the worst part - once you know what you are dealing with & what is coming next, you can start to get your head around it and plan how best to manage things going forwards.

My hubby is nearly 4 years in from a Stage 4 diagnosis of bowel cancer with spread to liver, lungs & adrenal gland. he has had chemo every fortnight since then - on about cycle 70 something - he is living with cancer, not dying of it.

You will find strength to cope - we just do somehow - but you must keep yourself well, and make sure that the rest of your life continues, even if it is on a backburner.

This community is invaluable - you can say the unsayable (even unthinkable0 here and no one will think any the worse of you.

there will always be someone here who knows a bit of how you feel and just putting it all down in writing can have an amazingly cathartic effect.

All the best - keep in touch

Thinking of you

Zoe

Hi....thank you for your reply.....It sounds like the chemo is doing it job, like you said from a management perspective....sorry to hear about your mum.....its very difficult, even more so I think with having the distance as you can't see for yourself how they are doing......my mum has had her pet scan moved another 3 days on now due to her biopsy pain (she is very weak so recovery from that is slow...) - and yes once all the scans and stuff have been done we can get the actual stage diagnosis...the waiting is horrendous...…...

Sending positive thoughts to you and your family and thank you again! 

Rachel xxx

Hi Zoe 

Thank you for your message.....sorry to hear about your hubby, must be a struggle but like you said, you somehow find the strength....Have been so tired mentally and physically with the constant worry and travelling but am in a better place today after taking the day off and doing nothing but sleeping! 

As you said you have to keep yourself well in the meantime....but its not until something like this happens that you realise just how much of your daily life you neglect.....I keep thinking to myself that we are still at the diagnosis stage (although when confirmed it was lung cancer the doctors said she's likely had it for a year!) and my brother and I are already run ragged, so what will happen when we know what is to come...I know we can't predict what the new few weeks, months, years will entail (to be totally honest we are looking at the worst case scenario as she is so weak and frail already!) but am scared that due to where she lives, that it will take over our lives.....the main thing is my brother has 3 children to take care of and I have none so the bulk of the "work" for want of a better word, will fall on my shoulders......I think I am sounding selfish but also know that I also have a life to lead and being self employed, every trip/visit/hospital appointment means I'm not working....but I feel ok to say this here....I can speak like this to my brother, husband and friends who know her but its going to be a difficult conversation to have with mum and dad to try and express the need to allow others to help as well....she has been allocated a Macmillan nurse, I just need to try and get them to use the help and support available to them via other means.....

We also know she has moderate changes to her brain relating to dementia so that just puts an extra burden on the situation..plus she has massive anxiety issues...….very difficult to gauge which issue is making her the way she is at the moment...….

I have only been part of this community for 2 days, but already it has helped massively and given me some mental release being able to be honest and frank...…..

I don't want to wish my life away, but would like to fast forward a couple of weeks to the point of diagnosis so we at least know whats to come......tough times ahead...

Thank you again Zoe and am sending positive thoughts and hugs for your hubby...…..Keep in touch please.....

Rachel