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Original poster

Lung Cancer - Shit

103 replies

RomeoC · 01/06/2014 12:12

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 Hmm

OP posts:
Original poster
RomeoC · 06/06/2014 08:16

Thanks everyone - I think perhaps I haven't been aware of peoples stories until just now, I'm sorry if my replies have been in sensative

I am sad for every family hit by this awful illness - it's so vicious and nasty

OP posts:
Staywithme · 06/06/2014 11:26

Don't be silly OP, you have in no way been insensitive! I talked about my husband's illness none stop at the beginning, I think it was the only way I could process what was happening. What you and your family is going through is awful and please don't worry about upsetting other people. If they find the subject too upsetting they simply won't read it. Please feel free to discuss any worries you have on here and I'm sure I'm not alone in hopping that we can help in some small way. x

Original poster
RomeoC · 07/06/2014 14:17

Thanks - it's tricky to post with a teenager in the house, computers are 'communal property' even when they aren't

It's really hard on me not telling her & I think she is picking up on something as she is in meltdown over her exams

& she refused to go to college this weekend which is very unlike her

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Only1scoop · 07/06/2014 14:18

Thinking of you all Thanks

Vintagebeads · 07/06/2014 14:30

I lost my Dad to this four years ago he was stage 4 and secondary in his bones so alot further along than your Dad.Bastardly cancer.

Alot will depend on what type of lung cancer it is small cell or non small cell,I imagine his next step will be a PET scan its much more detailed and they will be able to tell more from that.
On the plus side he does have options,be it surgery,chemo, and sometimes trial drugs.
Be kind to yourself,its an information overload,like you I felt practical things help me feel useful and looking back they really were.
Make sure you have support from McMillan to,they were very helpful with filling in forms for things like allowances etc.
Lots of love to you and your family.

Original poster
RomeoC · 07/06/2014 14:40

He thinks Lung cancer is one sort of cancer people don't really get over so it's just a case of how long he has and whether it's worth having treatment to pro-long it

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Feelingaguiltydaughter · 07/06/2014 17:40

Hi Romero to a certain extent your dad is right - if you look at the percentages they don't look good, however we will all be facing the end at some point, the advatages your dad has is that he can now plan and do want he wants to do. Its not going to be easy and you will all be having a tough time coming to terms with it but every day he is here is a blessing, so one day at a time and one proceedure at a time. My dad was only 68 - so no age really but he died at home with me and my mum with not even a paracetamol in his system, he didn't have any pain and was only really unwell for a couple of days, although he was going downhill quite rapidly in the last couple weeks. Thanks

digerd · 07/06/2014 19:51

Staywithme
Thank you for your kind words of sympathy and all the best of luck for your DH Flowers

Original poster
RomeoC · 07/06/2014 20:00

I thought he might be right - he researches pretty well

Everyone I speak to says "I mustn't write him off yet" but I need to be realistic whether he has a few weeks/months/years it's now finite

& if I know I should be able to deal - false hope (that he 'might' die at some point in the future vs he 'will' die at some point in the future) is pointless and kind of sad

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Feelingaguiltydaughter · 07/06/2014 21:41

I think people say that because to say otherwise is too cruel. We all know exceptions to the rule - my dad was that exception. I spent the first few months of dads illness in total turmoil - sad, angry and slightly hopeful that they had got it wrong - I think I grieved for dad before he actually died, its been about 6 weeks since he has gone but I don't feel sad, I'm getting on with life and looking forward to the future, my brother on the other hand seemed to cope in the early months and is falling apart at the moment - different people different ways of dealing with it. You just have to get through it as best you can.

Original poster
RomeoC · 09/06/2014 12:18

I guess

Another exam over & only 3 GCSEs to go plus her big exam on Sunday

She has to practise hard later & she has a singing audition at 1 today

I bought my mum a computer yesterday & get to teach her how to use it.

They are at the bank today streamlining their accounts....

OP posts:
Original poster
RomeoC · 10/06/2014 12:41

DD had melt down today 'just' over exams but I wonder how much anxiety she is picking up from me Sad

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Original poster
RomeoC · 10/06/2014 21:09

Not doing too well tonight - his appt is at 10:30 tomorrow

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honeybeeridiculous · 10/06/2014 21:40

Thinking about you Romeo Thanks (((hugs)))
Are you going with your dad tomorrow?
DD may well be picking up that something's not night, I know my DC knew when I was hiding something,
You will feel some relief when you can tell DD, then after tomorrow you will have more information on how things are going. Look after yourself

Staywithme · 10/06/2014 23:53

Wishing you the kindest thoughts for tomorrow. Bugger it, it's so hard to find the right words. Just know that even though we've never meet face to face my heart goes out to you and your family. Thanks and if you're not in bed yet Wine xx

IWalkInTheSun · 11/06/2014 00:10

I have nothing practical to say except that I remember very well the moment when out if the blue I was told my mum had a 10cm tumor on her kidney. I am sorry. I am thinking of you Romeo. My thoughts are with you for tomorrow.

Original poster
RomeoC · 11/06/2014 07:22

Thanks guys

(Sorry about your mum, Iwish)

No my mum & dad are going they will talk to me when they get back

DD has a 2 hour dance class so will be out with DH from 8:45 to after 12

My lunch break is 12-2 so I'll go & wait at my parents house then

I will feel more in control when know what is going on

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Original poster
RomeoC · 11/06/2014 07:23

Sorry - I meant "Iwalk" not Iwish Blush

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Original poster
RomeoC · 11/06/2014 15:19

It's inoperable "they think"

He has to have a broncosocpy a week tomorrow with the results the following week - 25th June he had his first Xray on 29th May

I think that is awful

He might have a paralysing injection in his neck so he gets his voice back - maybe

I don't think much of this - it's so slow

OP posts:
LIZS · 11/06/2014 15:30

I'm sorry , it is very difficult for you all. tbh I don't think that the timescale is that unusual nor would make much difference to the outcome. It doesn't sound as if they have yet ruled treatment out completely though.

Original poster
RomeoC · 11/06/2014 16:47

I just wish he was at the teaching hospital or at Papworth (where my husband is treated for chronic lung disease)

This seems so slow

OP posts:
gleegeek · 11/06/2014 17:04

I'm so sorry you're going through this. It's a horrible disease Angry

My Mum had lung cancer and died two years ago. She was never told it was incurable, right to the end they were all 'fighting' it. The waiting between appointments and lack of news was very hard to deal with.

I think a lot depends on how well your Dad is currently. If he is otherwise in good health, then he stands a good chance of standing up well to any treatments they offer. I guess more will be known after the bronchoscopy...

Meanwhile I am in awe of your sorting out affairs etc - I wish we had, but we never thought Mum wouldn't make it... I'm sure it will be a great weight off your dad's shoulders to know that you are there offering such great support.

MacMillan are wonderful, but your parents will have to actively ask for help IME. My poor Dad only found out how fantastic they were after we lost Mum - they helped him sort out everything legal/financial and listened to many hours of confused thought.

Thinking of you, it's really tough x

Feelingaguiltydaughter · 11/06/2014 19:03

Hi Romeo - you mentioned papworth and teaching hospital do you live near Cambridge? If so I'm happy to meet up to chat - pm me if you think it might help to meet. As for it taking a month to sort things out that sounds about right - we had to do it over Christmas 2012, not a great Christmas. Remember one day at a time Thanks

Original poster
RomeoC · 11/06/2014 19:52

He couldn't even get an appointment with his GP today (or any GP)

Thanks FeelingaGuilty - but I'm not close to Cambridge

I'm sorry about your mum gleegeek (dd is a gleegeek too)

Dd has work experience next week and her 'boss' (her ballet teacher) has suggested that her first job is to find 10 musical theatre songs for each decade of last century to choreograph too

Her 'boss' knows & think teaching might be a bit full on after we tell her and thought of this - she is SO kind

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Vintagebeads · 11/06/2014 20:55

I would really urge your Dad or your Mum even to get onto Mcmillian.
They are so helpful in many ways.
After my Dad was seen at the hospital he didnt see his GP again.
He saw Mcmillian or the hospital.
Honestly he can call them day or night about anything.
Later on they came out to the house if he was unwell and they were amazing support to my Mum especially.
They know the answers to any question he will have the can access meds/medical care much faster than trying to run the gauntlet of your health centre.
They made us feel like Dad was the most important person and he also felt in control and consulted.
My thoughts with you all Thanks