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Original poster

Lung cancer diagnosis - Help!

39 replies

maybeyoushoulddrive · 28/09/2011 14:16

Hi

My mum has just been diagnosed with Pleomorphic lung cancer. Apparently it's rare and hard to treat Sad They're talking about preserving life rather than curing her. She's having a PET scan tomorrow and then starts chemotherapy on Tuesday.

I'm in pieces. Has anyone been through this before? How do I support her? What should I be doing? I live about 5 hours drive away, my dad had a heart attack a few months ago.

I would be really grateful for any advice etc etc. Am numb.

OP posts:
Original poster
maybeyoushoulddrive · 28/09/2011 14:16

Btw I'm a regular on here, just changed my name...

OP posts:
Original poster
maybeyoushoulddrive · 28/09/2011 16:37

No-one? Sad

OP posts:
RedRubyBlue · 28/09/2011 16:39

Maybe

Bumping for you - I am so sorry about your mum. Sad

I can't offer anything about lung cancer but I have been in your position with my Dad but I don't want to upset you further.
Hope someone can help.

IDrinkFromTheirSkulls · 28/09/2011 16:40

I have nothing helpful to add sorry Sad but my thoughts are with you and your family at this awful time Sad

Marne · 28/09/2011 16:48

I lost my aunt to breast Cancer (secondary cancer) which spread to her lungs but this was a few years ago and things have come on a bit sinse then (chemo is not as bad but still nasty). For my aunt the chemo made her very poorly Sad and very tired so your mum will need help with things, is there any relatives closer who could help? does she live alone?

I'm sorry my post is not positive, i wish i could tell you all will be ok Sad.

RedRubyBlue · 28/09/2011 16:50

Ok - go with your Mum to consultations. She will only take in about 30% of what is being said. Take notes and look up which questions to ask. Get in touch with MacMillan Nurses. I could NEVER have coped without them and they are a wealth of info and have far more time that the consultants, you can phone for leaflets or visit their website to email a counsellor.

Stay strong and focused and get your mum on a healthy diet now. Lots of veg, fruit, smoothies, steamed fish etc etc as much as you can get into her. The chemo will make her nauseous but try and get her to eat that is very important.

therugratref · 28/09/2011 16:56

I am really sorry you have had such devastating news. Unfortunately it is an agressive form of cancer and is very difficult to treat. Please dont google it, is there any way you can go to your mum? I guess she needs you at the moment, and ruby red is right about MacMillan they are great. xx

frutilla · 28/09/2011 16:57

So sorry to hear this. I don't have any experience of this type of cancer. Have two aunts who had breast cancer, one was a doctor and swore that taking large amounts of vitamin c helped her but obv. only if her doctor agrees to this.

Original poster
maybeyoushoulddrive · 28/09/2011 16:58

Thank you. Unfortunatley I'll struggle to get to consultations with her in view of the distance, but I'll certainly contact MacMillan. Is it OK for me to go ahead and do that for her? Mum lives with Dad so she's not alone, but they're pretty remote - village in the sticks - half hour drive to the hospital.

Diet - she's been told not to eat any raw fruit or veg, no soft cheese, pate etc when she starts the chemo. She lives on sald so that's a tough one...

OP posts:
PeachyPossum · 28/09/2011 20:48

May, I want to send you my thoughts and love, to you all.

Very different situation but the last bit of your post. I am poorly with crohns and have had to adjust to a reduced diet. I can't have raw veg, or stuff that's rich, or stuff with lactose etc. I was a salad lover, like your mum. It amazes me how much impact this has had on me. Finding small delights in food I can eat has had such an impact, dairy free ice cream, asparagus etc. My situation is so different from your mums, but my advice on the little bit I can offer it, is to focus on and find the little nice things she can have and really enjoy as a treat food wise. It lifts the spirits.

Sending my love again, xx

RedRubyBlue · 28/09/2011 21:44

Maybe

Very un MN hugs to you and PM me if you need to 'chat'.

Like I said before, Macmillan Nurses. I really would have gone to pieces without them and I salute them totally. They were just kind and wonderful and full of hugs and tea and advice. Lots of advice and lots of tea and an endless supply of biscuits that I didn't eat but accepted gratefully.

BehindLockNumberNine · 28/09/2011 21:50

I am so so sorry to hear this.

I am going through the same. My dear dad, at the tender age of 65, was diagnosed with lung cancer last week. He has had scans and it was found that it originated in the right lung and has invaded his trachea and esophagus and surrounding lymph glands (but mercifully not spread further) He is now in hospital on drips and being tube fed as he cannot swallow and finds breathing hard Sad

I saw him only 6 weeks ago and he was fine, having just been diagnosed wiht COPD and a bit wheezy, but nothing else. 4 weeks later he lost the ability to swallow and then last week the diagnosis from hell. So it was not COPD after all...

They cannot operate due to the location of the tumours. So they are going to give him heavy duty chemo and radio in combination. Apparently it is going to be gruelling. And will only buy him time. How much time no one is willing to put a time scale on. And the best they can hope for is that he can swallow liquids and soup. No lumpy bits. Not sure how his lung function / breathing will improve. No idea how fit he will be. Dad is a big, fit, healthy active man, keen walker and sailor. This is so sad...

My mum is in bits but being strong.

My parents are in The Netherlands (I am Dutch) but my dsis and I live here in the UK. So are limited in how much practical help we can give. Dsis visited last week, I am going this weekend.

Keep posting, perhaps we can support each other a little, or at least give us somewhere to vent...

Ps - why the name change - are your family members on here?

BehindLockNumberNine · 28/09/2011 21:51

Oh and he currently has a chest infection so chemo cannot start until he is over that...

Joolyjoolyjoo · 28/09/2011 21:55

So sorry you're all having to go through this. I'm afraid I don't know much about that specific cancer but my mum was ill for years and my FIL had lung cancer, and I found that finding out as much as you can about the condition was helpful- helps you understand symptoms and pick up on them , and also helps when you have to discuss treatments etc with doctors. Being armed with knowledge always made it easier for me to know what I was dealing with, but choose your sources carefully- googling wildly can make you more confused!

And I'd second the MacMillan trust- they were great when my FIL was ill and a huge support to my MIL

All the best

stitchthis · 28/09/2011 21:59

I'm sitting here wanting to be constructive but can really only say ' you are not alone'. I have been there with my mother and eventually took great comfort in realising that there were others who I could talk to because they'd been thru similar. Macmillan are wonderful too, definitely. Keep posting for sanity's sake and take care.

RedRubyBlue · 28/09/2011 22:40

Brew and a Biscuit to you op

Original poster
maybeyoushoulddrive · 28/09/2011 23:11

You are making me cry with your lovely lovely messages. I was feeling very alone, funny how an internet forum can be more comfort than real life sometimes...

BehindLockNumberNine - I'm going to email you - we're old friends! I'm so so so sorry you're running parallel to me Sad I'm sure we can support each other through this...

I've registered with MacMillan online tonight, and will give them a ring in the morning. We're going to stay with my parents for the weekend - until we have an idea of time scales I'm hoping just to stay a couple of days this time and go up more often and for longer later on...

I'm so grateful for you all taking the time to help me xxx

OP posts:
RedRubyBlue · 28/09/2011 23:37

No probs Maybe

Keep in touch and a hug to you and your mum.

BehindLockNumberNine · 29/09/2011 07:32

Oh maybe I now have an inkling of who you may be... Do you have my recent email addy? If not, pm me. We will support each other. I am so sorry you are going through this too.

Oh bugger and now my keyboard is playing up, I cannot do carriage returns (now there is a phrase from my typing lessons many moons ago) so it is all becoming one long rambling message. Drat!

Original poster
maybeyoushoulddrive · 29/09/2011 09:27

Have PMd you!

Love your name RedRubyBlue - any significance? I used to love a band called RubyBlue and you've reminded me to try to track them down!

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RedRubyBlue · 29/09/2011 10:42

Maybe
I have no PM in the inbox. Hope you are okay.

Original poster
maybeyoushoulddrive · 30/09/2011 12:34

Sorry RedRubyBlue - senior moment!

I'm OK. Have had a couple of good chats with lovely friends, so don't feel quite as panicky. It still feels quite surreal. I'm going up to my parents this weekend, so I'm sure that will be emotional, but will be nice to all be together.

Once we know the reults of the PET scan I think we'll have more of an idea of prognosis, how much time etc etc. From what I take from therugratref's post, I'm guessing we should be prepared for the worst Sad

I'm sure I'll be on here regularly looking for company!

OP posts:
Original poster
maybeyoushoulddrive · 29/02/2012 10:36

An update

My lovely mum passed away last week. She had pneumonia which didn't respond to treatment. Turns out the cancer had spread to her spine and bowel. It was very distressing seeing her struggle to breathe and I'm glad she isn't suffering anymore.

Thank you all so much for your lovely messages x

OP posts:
Abra1d · 29/02/2012 10:41

I am so sorry to hear this.

Look after yourself.

Sometimesiwonder · 29/02/2012 10:48

Sorry, Maybe. But she is not suffering any more.

Look after yourself. x