Lung Cancer - Shit

[RomeoC]

I posted this under a different nickname but as I had a whole namechange failure I asked MN to delete it

I'll PM the nice people who posted to explain......but this is where I'm at:

My Dad has lung cancer
He is 70
He gave up smoking at New Year

Shit, shit, shit

I'm using an old name as I don't want DD to know until after her GCSEs

Shit, shit, shit

He has an appointment a week on Wednesday to discuss his options (which I think is a hellishly long time to wait)

It is 8cms
I've known now for 90 mins
He found out at 7pm last night after an Xray & a scan on Wednesday

Shit, shit, shit

Good news is that there is no cancer on any of his other organs - if that can be good news

I get to do all the paperwork if he dies - we're going to build a spreadsheet of passwords

Sorry to hear about you dad, it might seem like the wheels are turning too slowly cos you have a need to get things sorted, I can fully understand that.
Your dad sounds quite well in himself, can you use this time to bolster his health further, vitamins perhaps some calorie laden drinks like fortisips
( I've heard asda do a similar one) I hope that doesn't sound like I'm trivialising it, just thinking the better his health generally the better he will tolerate treatment.
Getting paperwork sorted is a good way of keeping your mind busy and feeling like you are doing at least something.
I hope your DD does well in her exams and that you have some support someone who tolerates soggy shoulders.
Do get macmillan on board the GP can refer, they were the best most useful and helpful thing we sorted when DH had cancer, their support continued for over a year after he died.
They are happy to talk to family and friends and will liaise with GP consultants, district nurses and anyone else. They paid towards our boiler repair when it broke Christmas Eve, they will sort out any other forms and paperwork.
Do PM me if I can help at all.

this suggests he is 3B & maybe T4 N2 & M0

What the hell that means I don't really know

just caught up with your post OP
I think the timing is about right I'm afraid. My dad was diagnosed 27th Jan & started radiotherapy early march,& his is a teaching hospital
I also cant praise macmillan enough, they are fab.
stay strong & be there for your parents. Doesnt sound like they're giving up on your dad. My dad was told his cancer was inoperable, but its still treatable, & youv said it hasnt spread so there is hope (((hugs)))

Still coming to terms with it as it's early days

The (injection?) to deaden his vocal chord nerves is vital for him - he told the doctor "him without a voice was like Casanova with his prick" which I don't think went down very well

DD gets told today - I'm going to chat on the teen boards about approaching that & dealing with it

Have been thinking of you - and will be today as you tell DD x

Thanks Hassled - it's not been great

Thinking about you Romeo hope today goes as well as it can,given the circumstances x

Thanks everyone - & now DD knows I can talk openly about it

She thinks I'm very clever keeping it from her until her exams finished & she didn't suspect anything

She wants to know how I hid 'feeling sad' - I said I had good friends who supported me in real life and on-line

Aah bless her. You can all support each other now (((hugs))

I guess - she doesn't really want to talk yet

DH has said "oh do you think he might die"

Triggering a long conversation about palliative care & making the best of my dad's time

It's broncoscopy day, today - with no results for a week

I'm so impatient

& they told him they would do it all again in a couple of weeks; not because they think anything will have changed but because someone else needs to see it

My dad was not impressed

Spoke to a large number of helplines today & we found out

A) it should be moving faster
B) appointment/tests are not happening in the right order
C) there is a 50% chance of him making 13 months

Life is so shit!

I'm so sorry to hear that Katy, devastating for you all,
Can you speak to the consultant oncologist about your concerns? Does your dad have a Macmillan nurse? I know that they can find out things about treatment times etc and they are great for venting your fears to.

He doesn't have a "consultant oncologist" yet
He doesn't have a "formal diagnosis" yet (although they have told him & it's fairly obvious is 3A or B - we're not trained enough to differentiate
He doesn't have a Macmillian Nurse or a named nurse or even anyone who will tell him when his next appointment is (it's not next Wednesday they lied to him & told him he had an appointment booked (not with an oncologist but with the respiratory clinic) and they haven't)

So we are 3 weeks in and basically they keep delaying - we think they have written him off as they can't do anything much

I still can't get over a second broncoscopy in a few weeks so the ENT person can see what is going on - why the hell couldn't he have looked yesterday

That's shocking really
Is there a 'pals' at the hospital? They will take complaints/concerns really seriously,
You can phone Macmillan helpline, (sorry if you already have) and talk over your concerns and I'm sure they will help you sort out some of the awful delaying,and general dragging of heels
I would have thought the bronc results would be on a computer for people who need to look, it's ridiculous to have 2, I am fuming for what you are going through
(((Hugs)))

Maybe I'm being unrealistic

But I thought there were time targets for Cancer patients

I can't believe we are 3 weeks in with no plan, no support and no appointments

According the this he can wait 31 days after his doctor decides what treatment he needs before they treat, given that the decision to treat could be 5 or 6 weeks after he was first seen, that means potentially it will be 2/2.5 months later which is probably 14% of his remaining life expectancy

Actually if you consider that 50% of people will be dead by 13/15 months it's quite possibly a lot more than that

Hi again, sorry to say that it all sounds normal to me re the timescale - Dad was diagnosed by xray at the end of Nov, CT scan first couple of days in December then nothing really for about 3 weeks when we were told results and then what they thought they were going to do. He got his named nurse when we went for the results but no help from Macmillan at that point or ever really!

We had Christmas to get through without knowing whether an operation was viable - in the end it was open and shut as too tangled - so I know completely the uncertainties you are going through. Dads odds were that he would be dead within 6 months only 30% survived the year and that is horrible to try and come to terms with :(

Just make the most of his time when he is relatively well because unfortunately the treatment makes them feel very unwell - dad ended up back in hospital for over a week because of complications with the chemo and never finished his course.

feelinga sorry to hear what you went through. My dad was given a Macmillan nurse on the day he was diagnosed and she was such a help, different hospital trusts I suppose, which isn't much help

Oh Katy, I'm sorry to read things are moving so slowly for your dad, so frustrating and frightening for you.

Unfortunately, my mum's care was rather like this at the start (a different type of cancer, but similar timeline). It took weeks to get a formal diagnosis, even though it was abundantly clear from scans what was going on. They didn't do an investigative procedure which I thought (and had read) would be standard practice; they took a long time to get round to investigating a second organ where they suspected a secondary cancer; Macmillan took a long time to get in contact... It was all extremely stressful and maybe I should have questioned some of it at the time, but I just trusted that they knew what they were doing, and had good reasons for it all. Maybe that was wrong, I don't know.

I do have a good idea of how you might be feeling though- in my case, I would liken it to a 'fight or flight' sort of feeling- fear and adrenaline keeping me going during those weeks.

Sending lots of love to you.

He wait seems a long one.
Please get a mac nurse, you can get a referral from the GP.
If you can get a nurse now they will help sort anything out, they will talk to oncology consultant, they will explain things clearly whenever you ask, even if you've asked before. They will speak to any family.
They have the most knowledge of pallative care and drugs, my DH went into the hospice for a week to have his meds adjusted and keep a close eye on him. That helped him hugely, the hospice and mac nurse took the decision to stop chemo, it really wasn't helping him, I'm glad I didn't have to make the decision for him, we wanted the short time we had left to be spent with the kids and at home. Mac nurse sorted that all out and nurses to come and sit with him and keep him safe. Found him with his hot water bottle under the grill, he was just warming it up.
We had 9 weeks of having care staff 24/7 and district nurses a few times a day, the consultant from the hospital came twice to see him at home.

We can't have a Macmillian Nurse until we have a diagnosis

We can't have a diagnosis until the appointment after the multidisciplinary meeting on Tuesday & they haven't booked that appointment (& we all know how easy it is to get a hospital appointment)

& they don't stert the clock for waiting times until he has a diagnosis - so 30th May - 24th June has been a non-time as far as waiting was concerned.

They made the 2 week from GP target by creating a pointless non appointment where they told him nothing other than it was inoperable & it would be another week+ before he had a broncoscopy

& now my mum has a throat, ear & urine infection alongside cellulitis

I spent the afternoon at OOH