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Lung Cancer - End Stages

28 Jun 2016 12:24

Hi

This is my first time on here in the forum that no one wants to join.

My lovely mum was diagnosed with Stage III lung cancer in April this year after what may have been a misdiagnosed biopsy earlier in the year in which they thought that the mass on her lung was of 'cut glass appearance' and not cancerous.  Her symptoms did not improve on the steroids she had been prescribed and after a further biopsy she was sadly diagnosed at the end of April.  She was initially told that she would have a course of Radical Radiotherapy as a curative treatment as she would not be strong enough either for surgery or chemo.  Unfortunately, mum has had a series of bad chest infections and pneumonia coupled with severe confusion/delirium and hallucinations which has resulted in hospital stays.  She is now in hospital and very poorly following a pneumonia diagnosis and still very confused.

She was due to start her rads last Monday following it being postponed due to the infections but she was in such a confused state that she was not able to go on Monday, she went on Tuesday with some coercion from my dad, but would not or could not comply with instructions on Wednesday last week when it was then abandoned at the request of mum's consultant.  At a meeting with mum's consultant yesterday, he confirmed that the cancer had spread in her lungs (they had not re-scanned the rest of her body/brain) and any radiotherapy treatment would cause more distress/illness than the treatment would justify.

She is still very confused and is sleeping a lot.  She has lost a lot of weight and complains of mouth ulcers.  She is not able to come home as she is too poorly and my dad would not be able to cope so they are planning on discharging her on a 'fast-track' to a nursing home. 

The consultant told us she had "a few short months" but he told one of the nurses 1-2 months.  How accurate does anyone think this is based on your own experiences?

It's so hard to think about anything else at the moment and my brother is finding it very difficult to come to terms with the situation.

Sorry for rambling on and any advice would be very much appreciated.

Sandra x

Lung Cancer - End Stages

29 Jun 2016 16:13 in response to Sandra1963

Hi Sandra

 

My family is going through a very similar time. My dad was diagnosed last August with Asbestosis and a lung tumour.  He was advised against radiotherapy and opted for removal of the tumour along with upper right lobe - they also removed lymph gland as it had spread.  After a dreadful post-operative infection and nearly four months in hospital he started to recover and was feeling postive and told it looked clear.

 Within 5 weeks he was advised that the cancer had returned to the remainder of his right lung, his left lung and spine.  He has been told he has months to live (although not given any indication how many) and there is no more they can do for hm.  He weighs 9 st,  has no strength or muscle in his legs to stand and he too is having dreadful delirium at night. My mum is struggling with him.  Awaiting scan of brain as they also think its spread there, although since he has been given steroids he is having less delerium.   Other than that he is rational.  Spends most of his time in bed.  It is just so sad,

I totally understand your rambling.  I feel so frustrated that he was given this news and basically told 'sorry we cant do anything go home and die'.  So now we are just spending as much time as we can with him and helping my mum.  Talking lots, planning his funeral with him etc.   Today we were advised by GP that its time to think about the hospice - so surreal.

Sorry I have no advice for you other than to make the most of every minute you have left with your mum.

If you have a local hospice go and see them or ask for a visit.  They have been the best help and support we have had.  If not a Macmillan nurse. 

 

Val xxx

Lung Cancer - End Stages

3 Jul 2016 14:00 in response to Valkyrie

Hi my father in law (dad) was diagnosed with stage 4 small cell lung cancer April 4 2016 he was told 6-8 weeks to live without chemo n 9-12 with chemo it was such a shock he decided to do chemo, he got to round 2 n had to stop it would have killed him as he was so weak a couple of weeks later his gp came and said it wasn't months it was weeks (which means up to 4) he has looked at scans n the chemo wasn't doing anything. Since been told the news by the gp 8 weeks has passed and he's still fighting.  He likes to sleep a lot sometimes it's because he's tired n sometime boredom he said if it wasn't for his breathing he wouldn't feel ill which is good he does have back pain which he says is 2/10 and just started with mild headaches, does this mean it's going to his brain? He is eating about 6 tablespoons of cornflakes in a morning and after eight mints by the dozen sometimes he wants jersey royals n Ham lol but last night he ate two mouthfuls n said I just can't eat it so we made him a complan instead,he's been like this with food for a few months now was losing 9-10lb per fortnight but 2 weeks ago it stopped n he is remaining the same but still not eating a lot and I don't understand why? Yesterday n today I noticed he is grey in colour, does this mean he is near death now? He is still able to walk upstairs to bed even though the hospital bed has been in the living room 2 months now! Sorry to hear your posts and my heart goes out to all of you, this journey is terrible x

Lung Cancer - End Stages

5 Jul 2016 22:26 in response to Sandra1963
So sorry to hear about your mum. My husband died of lung cancer in December last year. Not going through all his story but we were told at start of October he probably wouldn't see Xmas and they were right. He died the week before. I found the Oncologist very accurate. Spend as much time with mum as you can. Take care xx

Lung Cancer - End Stages

5 Jul 2016 22:37 in response to NanB
Hi Sandra. I feel your pain so acutely. My mother passed of pneumonia resultant of secondary lung cancer (having spread from bowel through liver) in December. And my aunt, Mums sister, died from bone cancer (from melanoma) last week. Both times the timelines given by the medical professionals were very accurate. Spend as much time as you can with her and make it all count xx

Lung Cancer - End Stages

5 Jul 2016 23:52 in response to Sandra1963

Im very sorry to hear this....in my case my dad had nsclc st4...he lasted 8 weeks from diagnosis...at the end he slept95% of the time was on pain meds all the time and wasnt eating he passed in hospital as he couldnt be cared for at home....its only been 1 week since pasing and we are devastated as a family...he was 64..too young...im 40 and mayaswell be 14 the way im coping...but knowing hes still not struggling is part releif...its a terrible disease and i know what your going through...just take it one day at a time thats all you can really do.. .im so sorry for you at this terrible time 

Lung Cancer - End Stages

6 Jul 2016 12:37 in response to Sandra1963

Hi Sandra 

I'm so sorry you've found yourself here on these boards. Lung cancer is a very unforgiving disease and sadly 'happy endings'  are rare as its often spread extensively by the time symptoms become apparent .  I lost my own lovely husband to the disease in August 2015 - just 10 weeks after he was diagnosed. He was just 54 years old.  I feel blessed that I was able to care for him at home and he passed surrounded by love. 

The only advice I can offer is spend as much time as you can with your mum. Make every minute count.  Say all the things you feel you want to say. Tell her what a great mum she is and how much you love her.  We thought we had months left but in the end my husband went downhill so quickly - I still can't believe how quickly. I would also encourage you to continue posting here so you can get valuable support. 

Wishing you and your family and your mum much love 

Netty x 

Lung Cancer - End Stages

7 Jul 2016 17:27 in response to Inula

Thank you for everyone taking the time to give me the advice which is greatly appreciated.  I am trying to spend as much quality time with mum as possible and making the most of the time we have left and, of course, supporting my dad.

Mum is now sleeping quite a lot but she had a fall in hospital on Tuesday evening resulting in her fracturing her clavicle.  Her pain relief has been increased as a result of this.  She is still very confused but you can see her trying to work things out.  We are waiting for the care home to get a bed available which will be much more comfortable than in hospital and much more dignified.

It is mum's 76th birthday next Friday so we are planning a special day for this.

Best wishes and love to all that have provided advice xxx

Lung Cancer - End Stages

30 May 2018 00:54 in response to Sandra1963
Hi last week my uncle passed away he lives about 2 hours from us so we didn't really see him just on the phone we found out he died of lung cancer my cousins went to sort out his flat and was really surprised do you loose control of your bowels or bleed before you die of lung cancer as he didn't know he had it but the autopsy revealed he had extensive lung cancer I hate the thought of him struggling all alone

Lung Cancer - End Stages

30 May 2018 05:48 in response to tanyamumof2
What a very sad story. I cared for my late husband at home on his short battle with lung cancer and unfortunately can resonate with what you describe. While you hate the thought of him struggling all alone, he is now at peace, pain and suffering all gone. Condolences to you in a very sad situation.

Lung Cancer - End Stages

24 Oct 2018 07:50 in response to Inula

Hi Sandra,

       I have four elderly parents, all just shy of 80 and have been fortunate to have spent so much time with them all.They are all wonderful normal characters My father in law has pancreatic cancer which he has had for 7 months, my mother in law has lung cancer and has been battling for two years. She has part of neck removed and has limited movement on her left arm. My mother was diagnosed in May with lung cancer and he now under going chemo to be hopefully followed by 30 concurrent doses of radiotherapy My Dad has suffered for 10 years with diabetes,and heart complaints. He has a pacemaker and defibrillator in his chest and can only walk limited distances.with discussion with my wife I have given up work. My mother in law lives abroad so I can only call her for updates. The rest of my crew I keep daily checks signs and symptoms and give them all as much time as possible. Any thing they want they get. We have moved my father in law in with us now as he sleeps a lot buikt I push him to maintain a normal as possible, Get him dressed ,short outings which he seems to respond to. Mother was very anti treatment having had Leukaemia 10 years ago but with a little nagging and a little love is under going the treatment.Again I guess just being there giving support was enough and I understand from the consultant her chances are 50/50.My dad always tells me he is ok.i can see he is now so I made appointments to see the doctor for him and although he will get worse we can manage his conditions with meds. Sorry to ramble guys..but the bright side is I love them all and every day is special with them.

Lung Cancer - End Stages

28 Oct 2018 08:05 in response to Sandra1963

Hi, this is also my first time on here. I lost my mam in March of this year (2018). She was diagnosed of having lung cancer late 2017 although a biopsy came back as inconclusive. Pet scans showed a mass in her lung. Because of the inconclusive biopsy she was given steroids and antibiotics and was given another pet scan 4 weeks later. The mass has grown but only by a millimetre. She was operated on in the beginning of March and her torso was cut in half. She was released from hospital  after only 5 days, we were told the minimum stay would be 10 days. She took poorly a week later and was sent to a different local hospital for an x ray. She was sent home with anaemia. Two days later she was rushed into yet a different hospital where she ended up in intensive care with pneumonia present in both lungs. She died three days later. It wasn’t until we were given the go ahead 5 days later to register her death that we learnt she died not from cancer but a lung abscess. I am so angry and so confused, everything was wrong, everything, I just can’t get my head around it. Broken.

Lung Cancer - End Stages

13 Jun 2019 19:38 in response to mysticshell

Lung cancer 

My father was diagnosed with lung cancer in February 2019. And it was so unexpected as my father has other medical health issues which I had to in the end give up my job as a occupational therapist.

I am his carer and since he was diagnosed with dementia back in 2012 it hasn't been easy. He has long and short term memory and he can be quite deluded at times. Declining when he's at his worst, personal and general hygiene, meal time, dislikes of food choices etc. 

Cancer was further away from my mind, I noticed back in 2018 that he was losing weight and that he had a slight cough, especially when I took him on holiday in September last year.

I assume that his dementia was getting worst and asked his gp to refer him for cognitive memory Assessment. The referral was taking ages, so I kept on several occasions going back and forward to his gp for the same referral appointment. My father was wasting away in front of eyes, until I decided to go back to his gp requesting for a chest xray and more blood test. 

To my surprise my father's blood test came back with raised calcium with inflammation of the body. I then knew something serious was wrong with my father. That said day I drove to the hospital to get his xray done, what to come next I didn't expect the big dreaded C. (Lung Cancer). My father had several test, ct, pet scan, BIOPSY TESTS. For he's raised calcium the oncology booked an immediate appointment the next day for a blood fusion.  My father had his radiotherapy in April and May as he wasn't a good candidate for chemotherapy because of all his other medical conditions.

We are now in the month of June, he's lost more weight, he had major problems with swallowing, chest and neck pain and digesting his food, we had to liquidise his food, he was in so much pain. He's on pain control medication, which has helped as I couldn't  bear him groaning in pain anymore. He is on morphine and other pain relief medications. He's still losing weight he's now 9 and a half stone from being 14st.

Now he doesn't sleep at nights, from sleeping too much he appearing very tired. He just sitting up at nights. I'm not sure if it's the cancer or something else, is this normal...this is so unreal. From only eating 3 to 4 spoonful hes now eating his breakfast off but not his dinner. I do not know what to make of this. As he's still losing weight. We've got a couple gp and hospital appointments within the next week. I'm also in contact with his Macmillan nurse and the palliative care specialist, but this is so hard to come to terms with.

Let me know your feedback on my experience. 

Shazie63

Lung Cancer - End Stages

26 Oct 2019 23:32 in response to Sandra1963

Dear Sandra

I'm so sorry to hear your story. I lost my extremely brave and wonderful mum at Easter.

my advise to you is to spend as much time as you can with your Mum. My mums oncologist was pretty accurate with his prognosis of short months. 

I nursed my mum at home as this was where she wanted to be and it was truly the hardest time I have ever had , but the fact that I stayed with her until the end brings me so much comfort.

I had lots of support from Marie Curie who were invaluable . If you feel like you could do with some support I would contact them.

Take care x

 

Lung Cancer - End Stages

9 Nov 2019 00:32 in response to one-foot-infront-of-the-other

I am so sorry to hear about your mum.. I have been reading everyone's different difficult heartbreaking stories and I'm really confused about my mums situation. 
After spending 7 weeks in hospital being really poorly and not able to walk or coordinate very suddenly she was diagnosed with terminal SCLC on 17th October and given between 4/6 weeks left of life... we were and are absolutely devastated .. she was discharged from hospital nearly 2 weeks ago..as she wants to he at home..since then she is eating more.. seems to be getting stronger? I just don't understand it all? After what the doctors and nurses have said they don't expect her to live much longer than November but today .. for the here and now she is very much still so full of life?