Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

Heartbroken and don’t know what to do

49love
Posted by

Hi All 

My partner of Three years has been diagnosed with Stage 4 lung cancer and the prognosis was 8 months to live with treatment.

he’s gone back to live with is Mum and Three little sisters. I am just devastated he’s completely shut me out saying he doesn’t want me to give up my life looking after him 

Mum saying he will start to think straight soon she’s also had cancer in the past and thankfully in remission.We adore each other and so very close and yet he’s just shut down 

I am sorry to ask for advice on here with all what you lovely people are dealing with 

i am just devastated and want to help him 

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
darlo
Posted by

hi 49love . sorry you have had to find yourself here. lots on here with excellent advice.  think your partner very brave to try and shield you from the news.  lots on here living a lot longer than been told. he may just need a week or two to come to terms with awful news he has just been hit with..there are lots of treatments out there for your partners oncologist to try.  hope he comes round for you. 

Derek

onwards and upwards
49love
Posted by

Hi 

Thankyou for your reply. I know that’s what he’s doing thinking he’s shielding me. All I want to do is walk with him through this horrendous journey be there for him 

i know what I am feeling cannot even come close to how he is, I just feel broken getting hit with this dreadful news then him getting up and gone,he just keeps ringing me crying saying he will not put me through it because he loves me to much 

is this normal ? Anyone else experienced anything like this 

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
borderc
Posted by

Hi 49love 

So Sorry your and your partner have had this awful news, at the moment he will be still in shock and reeling from it all, he will be trying to process everything at the moment, I know when I was first diagnosed I couldn’t tell any of my family at first I just walked about in a daze, I eventually told my daughter first but it was hard

Try and give him time to come to terms with it and just be there for him when he wants to talk or cry 

Have they come up with a treatment plan for him yet most of us on here say once you commence treatment it gives you something to focus on, also there will be a whirlwind of different tests and scans etc. as for timescales they are never accurate I was given 9 - 12 months and that was 2 and a half years ago now, treatments for lung cancer as come such a long way now

Ask him if you can accompany him to his hospital appointments as it’s always better if you have someone with you there for support and to take in what’s being said as the patient you don’t always take everything in what’s being said. Have they said which type of  lung cancer he had and what stage it is. If your partner or you want any support or advice please know there is always someone around to answer

Love Margaret

49love
Posted by

Hi Margaret 

thankyou for your response it’s really lifted me.

He’s got SCLC  metastasis Lymph nodes, liver, I have asked him on many occasions can I go to the appointments he’s just refusing to let me in. 

My love to you Margret 

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
Gorilla1
Posted by

Hi 49love

I feel for you.  My husband is 58 and was fine 3 weeks ago.  Now he has stage 4 lung cancer.  His moods are all over the place, which is expected.  It is so scary for both of you and I see only too well how your partner will be thinking of you and wanting to protect you.  I think he will let you in when he is ready.  We've been told palliative care only but no one is talking about time as they don't know and are reluctant to say - it can either motivate you to fight or take the fight out of you. It is devastating and I expect like me you are feeling helpless.  All you can do is try to be strong for him and let him know you are there, which is not easy when it feels almost unreal and you want to go to sleep and wake up with it being a bad dream.  Sadly its not a dream and I think we have to take each day as it comes with its challenges and be there for our loved on no matter what.  My husband was offered a targeted dose of radiotherapy the day after having had to have stents put in as the tumour is so large it was cutting off his main vein supply to heart.  I did what I said I wouldnt and asked him to do it for me.  On the way down he told me he hated me.  We have to respect their wishes and deal with their anxieties which is hard as it is happening to both of us.  I wish to you and your partner the best during this time.  Remember how much he loves you and how scared he is for him and you.  Take care and try to have some faith.  xxx

My thoughts are with everyone out there who are facing difficult times.  Be strong for yourself and your loved one even though it is the hardest thing you will ever do.
Jill
49love
Posted by

Hi Jill

Thankyou so much for your reply, my heart goes out to everyone that’s been touched by this horrendous disease.The only way I can describe it myself personally is with in a split second your world is turned upside down by one word.

All the things you worry about before seem so very little now.I listen to my friends trying to give me advice on what to do and how to react.

I just look and think thank God none of you have been touched by this decease because unless you are in this situation you just don’t understand how painful and soul destroying it is. This forum is a Godsend to me and many others my heart breaks with what families have to deal with each and everyone of you are all in my prayers xxx

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
49love
Posted by

Keep strong with your husband and best wishes to you both x

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
Gorilla1
Posted by

Thank you so much for your message.   I wholeheartedly agree.  It's like my world has ended.  I can't cry or bury myself in a bottle of wine as I need to be strong and positive and cope as well as I can for him.  God only knows what is in his head as my thoughts are all over the place and today I cuddled my big strong man who had tears in his eyes and it ripped me apart.  I can't ring anyone as I don't want him to hear so this forum is as you say a way to share and vent and try to be there for others.  My friends tell me that we should "grow a pair" and are being weak but the shock is catastrophic and it takes time to get to grips and accept what is happening.

Take care and be as strong as you are able.  Do keep in contact if it helps and remember there are people here for you. Xx

  

My thoughts are with everyone out there who are facing difficult times.  Be strong for yourself and your loved one even though it is the hardest thing you will ever do.
Jill
Gorilla1
Posted by

It doesn't get any easier.  Had to call ambulance and rush him to hospital with respiratory failure. Tumour constricted the superior vena cava so SVCO and stents put in are not working and they cannot go back in.  He was looked after and has turned a corner but if he arrests they do not recommend resuscitating and he has signed a DNR.  Consultant was full and frank at our meeting yesterday. "Short months" with no treatment.  He has an infection that needs to be clear before considering immunotherapy as he is too weak.  The 2 sessions of radiotherapy have freed some of the bottom lung to receive air but the tumour is now 15cm.  He cried last night and its so sad to see.  Every day is a roller coaster.  Hes so sad that he cannot walk more than a few paces and I have to wash him.  Wanted me to look at Dignitas.  Took him home last night and he slept well in a hospital bed I had set up downstairs.  This morning much brighter and more positive to fight the infection and be able to have the treatment.  No knowing if that will work.  Does anyone have experience of this therapy?  The thrombois clots are all over his chest and I'm so worried that this will arrest him.  Hard to accept that his world and mine has turned on its face so quickly.  I know we are only 2 of many suffering and am grateul to this community for the support.  Feeling very low this evening so sorry if this is rather down-beat. xxx .

My thoughts are with everyone out there who are facing difficult times.  Be strong for yourself and your loved one even though it is the hardest thing you will ever do.
Jill
49love
Posted by

Hi Jill

really sorry to hear this I pray he gets the better of this infection so he can start treatment

with him feeling more positive this morning hopefully it will give him the strength he needs to start treatment.

i know through my family soon has they was diagnosed they went downhill and we all thought with Three family members that this horrendous disease had got the better of them eached faced different things chest infections,pneumonia,heart problems that had to be dealt with before they started treatment it was very scary touch and go but they came through it got on the treatment immune for 2 of them and chemo for the other one just near on 3 yrs down the line they are all still here 

please try and have some rest yourself also 

you are in my thoughts and I am here anytime you need to talk just like the rest of the community xxx

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
Gorilla1
Posted by

Thank you for your message and sorry for the time taken to reply.  Your words have given me some new positivity and hope for some progress with the treatment. It is good to hear from others as this is so new and scary and every set back seems bring us down.  As we say each day at a time and I do feel more energised knowing that these different set-back that are enormous challenges in themselves  do happen and can be overcome to allow treatment. 

Thank you again for sharing your own experiences.  Onwards and upwards. 

Will love and positive thoughts and best wishes to you and your family and all out therexxx

My thoughts are with everyone out there who are facing difficult times.  Be strong for yourself and your loved one even though it is the hardest thing you will ever do.
Jill
49love
Posted by

X

Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX   
Gorilla1
Posted by

Hi Jane, how are you doing?  How are your family members - I really hope they continue to thrive.

My strong man managed to have the first immunotherapy session through a vein in his foot as they cannot use his hands or arms owing to oedema.  Unfortunately he was rushed into hospital 2 days later with fluid on lungs and build up of secretions making it hard for him to breathe and feeling like he was drowning.  Another infection they say was community acuqired pneumonia which was treated by IV antibiotics and with mucus tablets (which we had asked the GP for weeks ago) and nebulizers he was doing well.  Then he contracted further pneumonia from the hospital.  Further CT showed that the stents inserted for the SVCO had occluded so the veins not delivering blood flow and too many clots to allow successful further intervention.  I dont see how the cancer tumour or the targeted radiotherapy could have occluded titanium stents we feel that the original insertion might not have been successful but in any event radiologist will not go in again as too dangerous and may not give the desired result.  Clexan injections have been increased but of course there is the risk of bleeding out and I'm a bit scared each time I inject him.  He's home now after 13 days as they fast track discharged him as terminal - that word has not been used before - incurable but treatable was the previous description.  Consultant said to me in private that he could go in days but if he was to rally then come for his next immunotherapy appointment!  That was a week ago and he is still with me but scarily weak and almost skeletal from his chest down as cannot eat, difficulty swallowing also very confused.  He was not well enougth to go for his 2nd session which was due today but consultant as rung to say if he is a bit stronger she can see him Friday.  I dont really know what is going on.  I feel that he may be actively dying but then he surpised me as this morning he is out of bed and more lucid though really sleeping 98% of the day.  Ive tried to coax and bully him into eating little bits of his favourite things or fattening things but Im not sure if he has given up and wants to starve himself.  I know he wants it to be all over. Saw Hospice Nurse yesterday and he was strong to ask her is she would look after him - not that I am not looking after him he mean accelerate his dying and of course they cannot do anything illegal.  Maybe Im clutching at straws but his left hand and arm have reduced in swelling over the last 48 hours so maybe the Clexan is helping the clots.  Eternal optimist but I dont want him to suffer.  Can control the pain but not the mental axiety. So very sad as dont want to lose him but dont want him to be so sad and depressed.

Sorry to run on and on.  Thank you for listetning to me.  Feeling a bit helpless and rubbish today just want to hug him and make it all go away.

xxxx

My thoughts are with everyone out there who are facing difficult times.  Be strong for yourself and your loved one even though it is the hardest thing you will ever do.
Jill
49love
Posted by

Hi Jill 

Omg what a terrible time you and your Husband have been having the pain you are both suffering comes through from your post 
I am so so sorry to hear your Man is still feeling so bad and having to deal with yet further Set backs my heart goes out for him 
I really do hope your are looking after yourself the pain we suffer knowing what are partners are going through is so horrendous I wouldn’t t wish it on anybody 
I’m sending you a massive hug please try and stay strong and look after yourself also 
My family are doing good they have there little up and down days from time to time but we are all just so amazed how well all 3 have come along from the first few months when they were diagnosed 
I genuinely believe because they were all diagnosed within 8 weeks of each other this has mentally made them stronger looking and seeing how each other are doing with treatment plus they have each other to talk to because they all know what the other is going through 
I have been in Hospital myself when my partner got diagnosed he went back home to his Mums in Ireland he then called me to say he only had 2 to 4 months and couldn’t have treatment 
I was absolutely broken didn’t eat or drink so ended up in hospital to get some fluids in me 
This is why I am saying to you please look after yourself 
 I didn’t my heartbreak completely took over me 
My Partners Mother was great with me when we first meet but when she found out he was moving over to here she wouldn’t speak to me blaming me for taking her son away 
He’s always been the man of the house looked after his Mum and 3 little sisters I did have a lot of empathy for his Mum but she wouldn’t speak to me so I was devastated when he went back and he gave me that news  I thought she wouldn’t tell me if he passed or if he was asking for me when he was bad I had alkinds going around in my head I am out of Hospital now living back with my Dad and lovely Step Mum but my Partners been back in touch Sunday asking for me to forgive him for the way he treated me he got scared and also couldn’t deal with the pain he seen in my eyes when he was told he had cancer 
He said he wanted more than Two years with me I asked what he meant by this and he replied the oncologist gave me 2 to 2 half years to live 
Jill I near dropped the phone I am in so much shock and feel totally numb that he lied to me about the prognosis 
I know he’s still ill but the pain I went through worrying sick if he’d passed I don’t think I’d ever get over 
I’m about 60% feeling better now 
 I feel so torn now because he’s crying down the phone he wants to come back over but I can’t get out my head the lie and the pain I went through I guess I’m scared to go through that again ( he doesn’t know I ended up in hospital I dont want to burden him)
My head is all over the place at the moment do I take him back and look after him and spend what quality time we have left together I so want to I just want us back the way we were so so close with a good future ahead of us but sadly I know that’s not going to happen or do I try and somehow rebuild my life again either way I know I’m facing a tough journey ahead I still love him with all my heart but I hurt so bad he’s usually a gentle caring man so this is why Im in shock
Please let me know how you and your husband are doing I hope he feels better to continue the treatment I am here when ever you need me 
Jane Xxx 
Pain eventually makes us stronger
don’t ever judge anyone unless you have walked in their shoes 
i
my love to you all that are fighting this horrendous disease 
Jane XXX