Aggressive lung cancer and Mets

[Hopes77]

Hi All

I've posted before on here but not for the past 6 weeks.

Recap..my mum then 77yrs was diagnosed with lung cancer and liver cancer with Mets to her spine, pelvic area.

She was diagnosed in Oct last year and underwent 4 chemo sessions.

Her last chemo was in Feb this year.

A week after her last chemo she underwent a further scan which said that the cancer had shrunk further and for my mum to get on with normal life as they monitor her.

8 days later she cut her head open needing 20 stitches after going to use the bathroom and then became dizzy and hot.

Whilst admitted into hospital they kept her in overnight and did stays of her head and chest. Her head came back with no Mets and her chest x ray showed a small blood clot as a result of the chemotherapy and was started on blood thinners.

She also started bone injections to strengthen her bones after the chemotherapy.

6 weeks ago she was complaining of pain in her lower back, crying with the pain and wishing she was dead because it was that bad and she couldn't eat or sleep with the pain.

Eventually as our GP surgery couldn't keep on top of her pain she was admitted into hospital and has been there for the past 4 weeks on their palliative pain management team ward.

They have looked after her very well and she has undergone various scans and mri and they found that the cancer Mets had spread to her upper spine and the lower pain was caused by compression due to the cancer.

They started 5 treatments of radiotherapy which she finished the last one 10 days ago.

She still has pain abielt not as bad and they took her off the pen drive of morphine and now administering oxymorphine in tablet form one of a morning and one of a night.

If she requires pain management throughout the day they top it up with the liquid form.

My mum has lost a further 10lbs which she couldn't afford to lose. She had no appetite and were having to coax her to eat.

She been on the tablet form for nearly a week the past couple of days she's been experiencing nausea and vomiting.

She is to have a further ct scan in the next 3 weeks to see if the radiotherapy has worked.

The past few days apart from the nausea and sickness (She swallows the morning tablets then brings them back up again) she's started to look so much better. She has colour to her face and they have been working with her by giving her physiotherapy to help build on her up.

I was told 2 weeks ago to make an appointment to see her Dr at the hospital and when I went in that evening the Dr wasn't available but the sister who I hadn't seen before was in.

She took me to one side and started explaining where the cancer was and were it had spread then grabbed hold of my hand and said spend as much time as possible with your mum as she's got 6 weeks.

It felt like I'd been hit by a bus.

I collapsed sobbing uncontrollably when I got home and told my husband who was just as shocked as me because she's been showing some signs of improvement.

He contacted the hospital and was out through to the clinical director/manager who had regretted the way I had been told and said she would complete an investigation and get back to us. We're still waiting.

The following day the same sister took my husband and I to one said and said I'm sorry your mother has months and months?

We finally met with the Pallitive Dr on Monday who said that I shouldn't have been told that as they do not know how long my mum has and they would never say that to the family?

She said from a palliative pain management point of view she's ready to go home, from an OT assessment she's ready to go home and the care package team are on standby. They are just waiting for the physiotherapy update.

The Dr said that she will be signed over to the community palliative care team.

Also she had spoken to my mum's oncologist who said that depending on her ct scan and if she's strong enough they may consider further chemotherapy.

I personally don't think her body can take much more.

I've also noticed that she gets quite confused and sometimes looks very distant I think it could be the medication but the Dr said that they will be doing a head scan as they have noticed this as well.

Now I've just received a telephone call from the nurse who said she's been advised to contact me by the Dr to discuss details 're the care package in preparation for her to be discharged home, but then said she wasn't too could today after being sick and feeling dizzy?

Now I'm very confused and anxious is the sister right with her information and are they sending her home to spend time with the family?

Can they still send her home when it appears she still not fit enough?

Can a sister give you this information on life expectancy or does it have to come from the Dr?

I feel I'm being mislead ?

What's your thoughts on this?

Also the fact that she has no appetite and she gets confused and they are sending her home like this?

Thanks in advance x

[Dismal]

So sorry to hear that your mum's going through this.

In January husband was in hospital and the cancer nurse told us that he only had six months which was a complete shock. Sadly he died two weeks later from complications but it still angers me

If they are planning to send her home then make sure that proper care plan is in place first.

Feel free to message me if you think it may help.

Take care and look after yourself.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Hopes77

So sorry to hear of the change in your Mums health and all the distressing news you have been given. Be guided by the Oncologist in all aspects. If your Mum is not well enough to come home, they will not send her and you can also air your concerns. Has your Mum made known her wishes for what care she receives either in the hospital or at home.

The pain management teams are excellent in their care and will provide support for you all.

You may wish to consider speaking to an advocate in PALS (Patient advice and liaison services) at the hospital, who can support and assist you with any questions, complaints or what process to expect. They offer confidential, advice and support.

If you wish to discuss anything you can call us on our free nurse helpline on 0800 358 7200

All the very best

The Roy Castle Support Team

[Hidden]

Hi ,it's sounds like you and your Mum have been put through it a bit ,maybe having whatever time she has left together is to all your advantage .Your Mum might well be confused and no doubt nurses in the community might be able to help with this .

My own Mother asked how long she was going to live with lung cancer ,the oncologist said 4_6 months ,Mum went on for 4yrs she was 63yrs.I don't think anyone can give a clear answer ,I have deliberately not bothered asking how long I have to live but remain hopeful that I will get longer than everyone thinks ,I have a grade 4lung cancer in 3 areas I am 58 now diagnosed initially at 55yr .I have had radical surgery,chemo and radiotherapy to a brain tumour .

I know everyone is different your Mum is older which must make treatment and drug side effects worse for her .I wish you all well and remember no one really knows when it is time to die ,how can they .Thinking of you all .Diane

[JanetteR57]

Sorry to read of your appalling experiences with your mum. A close friend of ours who had widespread LC, was also confused but hospital staff thought it was a urinary infection, dehydration or something else before discovering it was brain mets. I spent 14 nights in hospital last year with pseudomonas infection and the barrage of meds they threw at me (IV and oral) made me very confused and not at all my usual self and it has taken months to get all that out of my system. If your mum is still losing weight, then irrespective of what she eats and drinks, she could well be dehydrated so please ensure she is getting enough fluid as this can help. Also disturbed sleep can increase confusion and we all know that hospital settings aren't restful and pain seriously disturbs sleep. Therefore the confusion could be due to a combination of factors but medics focus on the breathing as their priority as I found out last year - the side effects the various meds were causing were of little interest to them as my breathing was being brought back under control. The fact that I spent 14 nights in there compared to just 6 when I had open thoracotomy for lung lobectomy 6 years earlier was more frightening to me! Removing and collapsing my lungs had less effect than a hospital acquired antiobiotic resistant chest infection made me appreciate how nasty the particular infection was.

No clinician can say with certainty how long somebody has got left - there are so many factors not least a patient's reaction to news like that - some fight all the way and others just give up. I'd speak to her oncologist and if she has a cancer nurse specialist, explain your thoughts/feelings/anger to them as they can look into it. You really shouldn't be spending your precious time working through this - you could also complain to your Clinical Commissioning Group to take this up with the Trust concerned as well as through PALs. You and your husband probably could do with support yourselves - have you thought of the Macmillan support service or the Roy Castle nurse led helpline? Good luck at this difficult time for you all.