Terminal

[susan_driscoll]

I am new here just trying to find out things,my Husband was diagnosed on 22/12/16 then came the news "terminal" we thought it was just the lung but also lymph node and back of the tongue,we have had palliative radiotherapy to both areas but because it never really made much difference apart from horrific side effects they are not willing to do anymore.He was given approx. 12 months last december

[miasam]

Im so sorry it must be very hard for you both .im shore you will get lots off advice on here its such a nice site to talk to peaple .im in a similar thing as you my husband has lung cancer and brain mets which was diagnosed lung in april 2015 then came back 2016 then the brain mets july this year as you.. he was given steriods and was given 5 pallitive radiotherapy sessions and was told thats all they can do .and like you was told under a year .the steriods coused him to not sleep be very angry all the time his very unsteady on his feet his being weaned off the steriods now so still not sleeping and not really eating .thought id tell this to you so you know i know what your going threw but we have a lovely palitive nurse who comes in who you can talk too .she understands what your thinking and worried about .and will answer what ever you ask if she knows the answer so hopefully you have someone like that is your husband home or in hospital .there must be someone who cares for him to talk to .but its very hard there isnt any science that can predict what is going to happen next you just have to go threw each stage try to make some happy memories have your family round you and hope you have someone to talk too about your fears. carol x

[susan_driscoll in reply to miasam]

Thank you Carol,yes we do have palliative nurses who I can talk to,hubby is at home where he wants to stay,he is still quite active apart from the searing pains around jaw and ears but this is the tumour(back of mouth) progressing as we got told at the appointment to discuss the recent mri,he is on oral morphine,steroids and solpadol also he had a PEG fitted in January because of the swallowing so all medicines/fortisp I put through tube.He did ask about chemo at the app but consultant said they don't think it would help.We see our other consultant on 13th oct this is for lung just to see if the treatment has done anything to help this time,I just thought they might of considered doing another round of radiotherapy on head/neck to help with pain.x

[miasam in reply to susan_driscoll]

Poor you cancer is so horrible im lucky at the moment his not in much pain just a lot off weakness he cant get about much .but for us is because its in his brain there is lots off forgetfulness he thinks his asked for something or his done something and he hasn't he gets very confised he losses track off time .we havent got to see our oncologist anymore she said that the palitive peaple will look after him .he has another mri on his brain on Wednesday and i think thats it .my husband wants to stay home too .it must feel so hard and frustrating for you seeing your husband in so much pain and not being able to change it .for me i feel ive lost my husband all ready he isnt the man i married any more his angry all the time he remembers the past but he doesnt remember what he did yesterday hope your ok any time you want a chat message me .take care carol x

[susan_driscoll in reply to miasam]

Yes we were told it can go to the brain,we see our lung consultant on fri so hopefully he has got the report back on hubbys mri,all I have noticed lately is sometimes he is "snappy" but I put this down to the steroids,just hope they don't up the dosage.Sorry to hear your husbands cancer has gone to the brain it must be very hard for you.x

[miasam in reply to susan_driscoll]

Ill keep my fingers crossed for you for friday .and i hope they find something to make his pain less as possible. Carol x

[Dismal]

That's so hard for both of you. Look after each other and take all the support you can get

[susan_driscoll in reply to Dismal]

We are making the most of each day,even starting a little decorating to take our minds off everything.xx

[dizzie-wh]

I am so sorry to read of your dear Husband's prognosis. Have the specialists everything i.e. testing of a biopsy for any mutations etc??? Just a thought because I was given 3-4 months and then they tested my biopsy and discovered a mutation that doesn't cure me but holds things at bay. I'm sure they will have explored everything BUT just a query.

Regarding support - I have received wonderful support along the way (3 and a half years now) from my Macmillan nurse and also from my local Hospice. Do you have that type of support?? These people aren't just for "end of life" care BUT can support you and your husband in many ways. If not then I would ask your GP for referral.

The main thing is to ensure your Husband is pain-free and comfortable and palliative care is so essential. Do please tell more??

Love and Hugs

Diz xxx

[susan_driscoll in reply to dizzie-wh]

They have explored every avenue I suppose there is only so much they can do,the throat is the worst as he cannot swallow no more so being fed by PEG tube,which I do 6 times a day along with medicines,just finished treatment for lung which has made bresthing a little easier,will see that consultant on 13th,I suppose age and stage of cancer plays a large part in who has what treatment ,I have palliative nurses I can ring with any problems I have also gp and have 3 brilliant married daughters who help a lot ,the lung at the mo causes no pain its just the throat that causes all the evil pain problems which we have now under control.Ty Sue.x

[dizzie-wh]

Sorry just reread my comment and meant to say "have the specialists tried everything"???

(((hugs)))

Diz xx

[dizzie-wh]

Dear Sue, I am SO sorry to hear what you say. That must all be very difficult/painful for you too. I am pleased to hear you have support from palliative nurses and family BUT it must be a very difficult time for all of you. I can only wish you all the best and that your dear husband be kept as pain-free as possible. Try and take care of yourself also during this time, eat well, try and get as much rest as possible and generally ensure you stay well. At times of great stress like this situation it is very easy to forget you and neglect yourself. So do take care of you too.

Love and Caring (((hugs))) from Diz xx

[susan_driscoll in reply to dizzie-wh]

Thank you Diz I am just so thankful I have my daughters around,just hope hubby stays as well as he is at the moment,he is a person who will fight to the bitter end,the only thing that gets him down is the awful tiredness,as he is a person who was always on the go x

[dizzie-wh in reply to susan_driscoll]

Hi again Susan,

Think tiredness is something that affects all of us with cancer. I think we have to learn to "go with the flow", so to speak. In my case I know now I live a life of one day on followed by a day off. It's certainly a learning curve in many ways. I am also pleased to hear that he is one "who will fight to the bitter end" - I'm a firm believer that a positive attitude keeps us going longer! All the very best to you and yours.

Love and Hugs Diz xxx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello susan_driscoll, I am very sorry to hear about your husbands diagnosis, as you can see from the previous responses this is a very supportive forum and there is lots of information and advice form others who are in a similar position.

If you wish to speak with someone pleae give us a call on our nurse led helpline

Freephone 0800 358 7200

Kind regards

Roy Castle Helpline

[susan_driscoll in reply to RoyCastleHelpline]

Thank you,I am lucky I have a very supportive abd helpful family,feel sorry for the people we meet at clinic who have nobody apart from there nurses.x