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Lung cancer what to expect?

1 Jun 2012 23:21

My mum Has been diagnosed with level 4 lung cancer. She has a tumour in each lung. One is more aggressive then the other. It has also spread to her lymph nodes. We have been told life expectancy is few weeks to a few months. I don't know whether it was fate but I moved in with mum in January as I my full time job was made redundant and I needed a stop gap and as a single parent with a young daughter mum asked us to move back into the family home and it made sens. Me and mum are very close we lost my day 15 years ago to a brain tumour and mum had list a lot of energy. I put it down to depression and mum wanted the company, little did I know we would get this diagnosis 4mths later. I called the ambulance as mum had this terrible chest infection and cough that wouldn't go. Who would of thought the night she went in 3 weeks later we would be feeling this devastated.  I have gone part time at work and me and my daughter. They have offered me a part time role doing my same job and I am pleased I did as I am now caring for mum at home. I know mum is feeling tired and has lost a lot of weight etc. She is also complaining of  pain that occurs at 2am in the morning at the same time is this normal? She says it's excrutiating. it's travelling round her back. Iam giving her oral morphine and paracetomol as directed fro district nurse any suggestions on anything else as I hate seeing her like this. Iam up with her at the same time is this normal nurse said it's the tumour contracting. I wad not around to see my dad as I was 18 at uni and it upset me and dad decided that he did not want me to see him like it. Although I was with him at the end atvthe hospice but did not experience the painful bit. My mum wants to stay at home and I just want an idea of what to expect with this. Iam a bit frightened and don't want my mum in pain. I have prepared my self for the worst news mentally in the hospital and have shown strength to my mum. Will there be pain and what other things should I look out for? Just need a bit of advice x    

6 replies
Last reply: 2012@clareb
02/06/2012 - 22:07

Re: Lung cancer what to expect?

1 Jun 2012 23:28 in response to 2012@clareb

Ps sorry for the bad spelling and punctuation Iam typing on my phone hope people can read it and it makes sense!

Re: Lung cancer what to expect?

2 Jun 2012 08:38 in response to 2012@clareb

Hi Clareb,

I'm so sorry to read about your Mum's diagnosis.

It's good that you are there to be with your Mum, but I understand how hard it must be to see your Mum in pain. Perhaps you could speak to your Mum's doctor about some better pain control, if what she's been given is not effective?

There is some information about dying with cancer on our information website; you might find it useful.

I hope someone comes along soon to chat. It's important that you get a break and have someone to talk to.

You might also want to call our nurses for some advice on freephone 0808 800 4040 (9am until 5pm Monday to Friday).

Very best wishes to you and your Mum,

Renata

Cancer Chat Moderator

Re: Lung cancer what to expect?

2 Jun 2012 08:41 in response to 2012@clareb

Hello, i am sorry to read this about your mum.... i have stage 4 lung cancer and when first diagnosed was in terrible pain, i take Zomorpth and Oramorph 9liquid morphine) your mums dose may need to be raised, also i have cancer in my bones , hip, spine, thigh, sternum and else where and found that a normal bed was too un-comfortable imy husband brought us a memory foam matteressand it was so so comfortable. Is your mum not being offered any treatment at all?  i say this because even though stage 4 is terminal it is still possible to have some treatment to ease the pain and in some cases add a bit extra time too.... i know your mum wants to stay at home but the hospice can be involved at home by visiting and getting you things to help your mum be comfortable, including more pain relief....   i know when i am in bed at night  the best thing for me to have when i feel the pain is too much is a cuddle and soft back rub... just to have someone is with you is very comforting.    I had radio therapy to my hip/thigh area and it really relieved alot of the pain,   i was given 2 to 3 months at first to live but i was put on a trial a new tablet called BIBW 2992 and it has kept me going for 2 years.   I know of a trial at the moment called the LUX LUNG 8 which is a tablet and chemo combined trial you could ask if your mum was suitable to try this out.   There are also other things available Tarceva ( A TABLET) and of course chemo but that may be too much for your mum, i hope that you can get some help to look after your mum from the cancer nurses and local hospice but do try and ask for stronger pain killers for her because i know the once the pain is sorted out you can cope with things so much more.

Love Deb xxx

Re: Lung cancer what to expect?

2 Jun 2012 10:04 in response to 2012@clareb

Hi Clare,

Your 'story' is incredibly like mine.

Mum was diagnosed on 17 May -just 2 weeks ago. She has Extensive Lung Cancer (Left Lung) which has spread into the Lymphatic system also to her Liver and her Bones.

She is to frail (5 stone after losing 2.5st in 5 months) so can't have Chemotherapy or any other treatment. She doesn't want to go in Hospital nor HOSPICE so I am staying with

her at her home. The oncologist told me on our one and only appointment on the 30th May that Mum has just weeks to live certainly not months.

She has a lot of fluid in the lung so is trying to sleep upright but keeps slipping down, she is so week and has difficulty raising herself up. I am 'sleeping' (I wish) on the settee

and hear her constant cough most of the night. She has developed a bedsore and 2 nights running around 3am the dressing has come off. She has back pain which the Doc

says is the bone cancer.She is only taking Paracetamol, she doesn't want to mention things as she fears Morphine-strange I know especially as it can do her no harm now.

It is only 2 weeks since diagnosis to this stage but already we have had a visit from a Macmillan Nurse (Very professional, very welcome) A district Nurse is to visit once a week

but they are on call 24/7 for dressing change etc. We have A visit next wednesday from physio to arrange some equipment-walking frame etc.

Make sure you have support from Macmillan/District Nursing and her GP- As she is at home the GP is actually responsible for her well being (sorry bad choice of words)

My Mum will never go into Hospital or HOSPICE- Macmillan do offer a 'Hospice at Home' which is basically visits by 'volunteers' that will sit with your Mum so you can have

a break also 'overnight stays' at a small residence to give you some time out They have days in a centre where they can meet others in similar situations do crafts if they want to

have a dinner etc at all times being discreetly 'watched over' by Nurses.

My Mum will not even consider that suggestion as she will see it as 'giving up' but maybe your Mum  will be more interested ?

As to what to expect ? Well you will have heard 'everyone is different' and they are ! Most Lung Cancers don't cause any pain it's where the spread is that may be painful

(Lymphatic system can cause neck/front chest pain, Liver pain under thre rhs Ribs Bone cancer all over aches. Most people don't actually die of Cancer but the complicatins of Cancer.

I will sound really cruel here but I hope for my Mum it is sooner rather than later as I don't want her to suffer-The bedsore, the backache,leg pain she has now in just 2 weeks

is almost as much as she can cope with. A common spread of Lung Cancer is to the brain which will cause all sorts of problems, my mum is getting a little confused, her speech sometimes

slurred and I think it is spreading to her brain.

My Mum has small cell Primary Lung Cancer metastatis Liver,Bones. If your Mum has non small cell cancer the progression would be slower.

Sorry if this sounds grim, I would want people to tell me the truth so hopefully I will have enlightened you a little bit.

Best Wishes

Delxx

Re: Lung cancer what to expect?

2 Jun 2012 21:55 in response to worriedson

Hi Del,

My mum has non small cell. I can fully understand what you are experiencing. My mum has another infection so back on antibiotics but you can tell the secretion is back on her chest. She is getting more weaker as she wants to go to bed earlier and is sleeping more frequently.

Mum has found a lump just below her rib, the doc has looked and said he does not want to do anything with it as it could cause more pain and be uncomfortable...to be honest it does not worry us as I think the cancer has gone to far now.

I think mum has had enough now. The frustrating thing is sometimes although she sits on the setee and is not mobile and theres a box of pills next to her I can still have a converstaion and it will feel like normal again and I forget especially when I am getting a lecture (although I am past 30!) on how I should meet a nice man who will look after me!

She is a bit withdrawn today.

Mum has bed sore this morning which I applied sudacream.

I know how you feel the most humane way now is if mum can go peacefully in her sleep this is a horrible disease to loose a loved one to. Seeing my mum as the strongest throughout the years and then to see her like this is devastating. I watch her every night, she wants me to sleep with her and I check all the time. She also now talks in her sleep and I think is it the morphine, or last words?

Mum did not want to take the morphine at first as she connected it to last days e.t.c but she is now taking frequently due to how painful the pain is.

Hospice at home, Macmillan and district nurse has been really helpful and I know I may need a break soon just to catch up on sleep as we are up at 2am to about 5am each morning for the last 2 weeks. I am just running on my adrenaline. I told mum today it is payback as she was there to support me on the night feeds with my daughter when she was first born as I did not have a clue what to do!

I lost my dad 15 years ago and it took me a long time to get over him I am now older wiser and a mum myself my worry is the missing bit. Its like losing not just a mum but a best friend.

My mum is defently not interested in hospice not even for a day so I feel I want to respect her wishes.

My thoughts are with you and thankyou so much on replying it is nice that there are people who are experiencing the same things and this experience although cruel means that I am not on my own.

Clare x

Re: Lung cancer what to expect?

2 Jun 2012 22:07 in response to kentmum

Hi Deb,

That is outstanding news on the 2 years.

They have offered mum chemo which will add a few weeks but she wants quality of life rather then quantity.

Mum went through chemo for her breast cancer 5 years ago and she said she does not want to go through with it again not to add on a few weeks.

Personallly, also the family agrees I think it has gone to far to try any other medication.

We are finding lump and bumps everywhere and even the doctor agrees that it is irrelevant to test these now.

I hope all goes well for you, you sound a very strong woman.

I agree without this pain it will be a lot better and manageable but I assume it is part of the package unfortunately.

I will ask the district/ Macmillan nurse higher dosage or more pain management.

I think laughter helps and the fact that we are all around mum at the moment also I try to make things as normal as possible.

All the very best you should be proud.

Clare x