Whats happening now lung cancer brain... - The Roy Castle Lu...

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Whats happening now lung cancer brain mets

miasam profile image

I put up before what was happening with my husband he had palitive radiotherapy on his head then they started to take him off the steroids which has been going ok his on 2 milagrams aday instead off 12 aday he seemed to be doing ok wasnt sleeping hardly and not eating agreat deal his moods are up and down and if he focuses on something he will keep on with it for days even if its something he says his right about and his not he convinces his self it is and theres no changing his mind .the beginning off the week he could still walk up the shop not far and would come back exhausted but his started not to be abble to manage the walk .and now his finding it difficult to even push his self off the bed or chair it can take hours .he doesnt want my help he can do it he says .in the end i had to say if you dont let me help you will have to go in hospital and they will help you this is something he doesnt want and neither do i .but i dont know what to do his struggling with the bath we have a lift which goes up and down but he couldnt get legs over and stand up .is this all normal as to what happens he has stage 4 cancer and we was told middle off july he had under a year .but i thought that the radiation on head would make a difference he had that the beginning off august and it did for a bit he could even do his crosswords abit again but now he seems to be detiriating. Has anyone got any answers please let me know . Carol

23 Replies

It's hard when you know it's a struggle that can't be won to give up even silly seeming independence or to make a big to-do about a little bit of food or drink. He'll surely fixate on empathising with you in the end just be sure you really know your feelings when he gets round to enquiring.

My husband is the same as yours. Have you tried to get him into hospice for a while. They will check that he has the right medication help him with mobility, my hubby spent a week in our hospice and it was amazing he has no pain he is eating small amounts . We know that he is on borrowed time, they have to come and except the help out for you and for him. I've been told not to force food just let him eat small amounts so I'm making soup which he manages. My husband's tumor is so big I can't begin to think how he moves each day. I know how hard it is but speak to your cns see if they can give you respite it can't hurt.

My thoughts are with you as this is road none of us want to be on but we need to look for the help that is out there

Goodluck x

miasam profile image
miasam in reply to Jacs55

Thank you ive all ways promised that i wouldnt put him in hospital or hospice .so its hard to know what to do for the best he had half a cup off coffee yesterday no food at all and slept all day im ñot shore if he is deteriorating or is it the coming off the steriods .mind you the not eating much started before the steriods was cut .i hope the road is fairly smooth for you .and good luck to you too x carol

Jacs55 profile image
Jacs55 in reply to miasam

I said the same. We had 8 days in hospice. We are now home until the end.

Sleeping so much could be the disease and coming down from the steroids but if he has been weaned off it shouldn't have that much effect.

Speak to your cns they are there for you too!

I wish you well x

miasam profile image
miasam in reply to Jacs55

He has been weaning off steriods how the doctor said on the 1st day she said take the 2 lunch time ones off then after 3 days take another 1 till his down to 1 which he is now stay on that for 1 week then do alternative days till he sees doctor again .

Thanks its hard i think you see things that arnt as bad as you think the least little thing and you think this is it his getting worse that fear never goes x carol

Hi Carol. My partner was exactly. The same he didnt make it to the e radio stage. H would ld not go into hospital. and i nursed him at home they say they can manage but they carnt i was stuck on top of the stairs one day for 2 hours in the end i got the district nurses. In daily. And the hosspice. At home staying overnight because he wasn't. Sleeping. He gad so many emotions. Going on in his head. He could not focus on any one thing. The help. I received. In the end was a god send he passed away at the end of march 2016 peacfully after a 6 month hard battle. It is so very hard when a fit person has to endure. A illness like this hope you can get the help u need and that all goes well for u both god bless xx

miasam profile image
miasam in reply to Brogan-12

Thats very like dave is. he cant focus he likes a bet not so much now but if he was on a good day he would walk up and put a bet on to watch on telly but now he sometimes thinks his put one on and he wrights random names down works out odds .but he could do that 10 times a day and it can go on for days and what he writes is not really readable .Saturday evening he sat on kitchen chair for 4 hours and couldnt get up but kept saying ill get up in a bit .he even told me to turn kitchen light off i dont no why unless it was to stop me seeing he was strugling he .slept then all day yesterday .and bever ate a thing .this morning his been a bit brighter had a bit off tea and half a slice off cheese toast his gone to lie down again now x carol

Brogan-12 profile image
Brogan-12 in reply to miasam

Its so sad watching someone you love be this way my joe liked a bet. I would put them on for him then by the time they came ne on tv he had no focus. Or interest he spent most of his days and nights. On the kitchen chair mostly staring at the floor. He would say he could not explain y he stopped eating and drinking althow. At times he felt hungry but he just. Could. Not mannage i tried evrything possible he coyld not get his head round y somthing. Diffrent. Was happening to him day by day he wanted to stay home no hospitals or hosspice byt the hosspice at home team are fab and so were the district nurses dailys twice a day which was good. For both of us. Evryday is diffrent. And without the help of theese amazing people i would not have coaped by myself take care and good luck xx

miasam profile image
miasam in reply to Brogan-12

Its all so very scary .we have only known about brain mets since 19 july he had started being sick constant headaches and kept falling over thats when they did mri ct scan they told us he had 4 mets and he would just be offered pallitive radiotherapy. I asked how long and they said under a year but they never said what was going to happen what to exspect .how long radiotherapy was going to give him as in time they was going to sort out a palitive care team to see him at home somebody phoned just after about a visit and it was all a bit off a shock and i said we wouldnt need help for a while yet i could manage and they havent phoned since.have seen our on gp twice and oncologist once 4 weeks after the radiotherapy were they told me how to wean him off steriods and she said she would see us again in a few weeks .but nobody has said what will happen how i will know when its growing again i just feel frustrated its the not knowing is killing me x carol

Brogan-12 profile image
Brogan-12 in reply to miasam

Hi Carol. Its the unknown thats the worst part we wernt. Told much either we just gad to reed threw booklets we got off macmillan. Nurse we got the odd phone call off the csn to see how things were and it was always the same from ongologist see you in a few weeks its very hard its mind games all round at the beginning. Of diagnosis. we were bombarded. with information then aftet that we were left to our own devises its such a awfull time but evryone is different. And because joe was palliative. He could get the district nurses daily up to 3 times a day ehen things got really tuff it also gave me peace of mind knowing they would be calling in. Which was much appreciated. When i was strugling. With him so please ask for help eveits just for a 10 minit. Visit it does help please keep in touch let me no how it goes for you both god bless xx

miasam profile image
miasam in reply to Brogan-12

Thanks for talking to me it is hard i told the palitive care team i didnt need them yet .but i should off exsepted there help . Our gp is very nice so think i will speak to him becouse he couldnt understand why the palitive nurse hadnt been yet .as he had come with the do not resuscitate form for dave to sign .that was 2 weeks ago .we have a nice macmilain nurse too but shes been off sick .if you dont mind me asking how long did your husband have cancer for daves statmrted in April 2015 in his lung then came back june 2016 were he had rest off lung removed and spent 3 half months in hospital then th e brain mets now was it like this for you x carol

Brogan-12 profile image
Brogan-12 in reply to miasam

Hi my joe. Was only diagnosed in september 2016 with sclc ehich wasnt curable he was told chemo could extend his life but has soon has his chemo finished that wad the end for him he only lasted 6 months he was to poorly to have radio and it spread threw his body so fast he never stood a chance this disease. Took his mind body and soul pervious to diagnosis. He was has fit as a fiddle i only got help in in the last 3weeks when the macmillan. Nurse said he was coming to the end of his life although. We new the outome we never discussed it we were protecting. Each other. And i think evryone should. Have hope untill there last breath but she just blurted it out to us we were mortifed and from that day on he went downhill very fast. We wernt told much on our journey threw the 6months then they just dropped the bomshell it was devastating. You have gone threw a lot on journey which must be so hard for you feel free to msg me anytime if you need a sympathetic. ear take care for now

miasam profile image
miasam in reply to Brogan-12

I will if you dont mind i just feel out off my depth at the moment xx

Brogan-12 profile image
Brogan-12 in reply to miasam

Anytime day or night xx

miasam profile image
miasam in reply to Brogan-12


Dear Carol

So very sorry to hear of the difficult time both you and your Husband are having just now. There have been some good responses and advice to speak to the clinical nurse specialist. There are lots of support services that can either provide aids/assistance at home , in the community and the Hospice.

The Hospice does not have to be a permanent stay, your Husband could be reassessed both physically and emotionally to provide whatever comfort, assistance there is to make both your lives a little easier at home.

The other alternative would be to contact the GP to do a home visit and the Macmillan nurses could assess your Husband at home.

It can be hard work for the carer as you are dealing with so many things all at once, make sure you have plenty support for yourself.

We have a booklet titled - Understanding Brain Metastases and lung cancer, this is the link that will take you directly to it:


We are happy to post out any booklet and this can be ordered online through roycastle.org

This is a link where Macmillan nurses give lots of good information/advice on those caring for someone with cancer:


Their telephone number is 0808 808 00 00

This link from carers UK provides information and advice - carersuk.org/

Their telephone number is 0808 808 7777

Carers UK also have an online forum.

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

Kind regards

The Roy Castle Support Team

Just saw your post. Sorry things aren't going well. My husband us his third chemotherapy this afternoon so will be leaving soon but will post more later.

miasam profile image
miasam in reply to Dismal

Hope its going well x

It's definitely worth contacting your local Mac Millan Nurses and your husbands lung cancer nurse specialist. If not these your GP and asking for a home visit. They will be able to offer you support in your home and tell you what's available in your area. This will be good for both you and your husband. They will be able to work with you both together.

I have worked in health care and have stage 4 lung cancer and so can see it from both sides. There are definitely people out there to help support you in your home. These people will have regularly dealt with others in your situation. They are there to help.

Your local social services phone number may also be worth phoning. They will be able to provide advice on their duty line.

Thinking of you x

miasam profile image
miasam in reply to Bow-19

Thanks i have done that now .sometimes you can feel very alone and lost its nice to talk to peaple who are in the same boat as you its not allways easy to talk to family .anyway have spoken with the palitive care people and they are going to come and assess my husband and hopefully will exsplan some off the next steps .they seemed very nice on the phone .they did phone before but at the time i was still taking it all in .and said i didnt need any help i could manage my self .any way they said they will be here in the next couple off days they are aranging with our gp a day when they can come togeather hope your ok and managing thanks x carol

Bow-19 profile image
Bow-19 in reply to miasam

Glad you have been in contact with them. You and your husband will now have a choice of what help and support you think is useful. I know I like to be independent and sometimes feel that I don't need help, then things move on quicker than expected and I realise that I do. Life is unpredictable. My local hospice has been very supportive to me and my partner. It's also a relaxing place to visit. I have recently been unwell and they have offered day therapy sessions for one day a week for 10 weeks with reflexology and counselling. It has helped me through a difficult patch and the day sessions and support are now coming to an end. Take care. If you need help before their visit ring your GP surgery and ask for a home visit on the day. They should respond to your situation X

They are coming this afternoon x

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