Looking for guidance

[Ace467]

Hi all , just wondering if anyone has been told by their consultants/oncologis that there’s nothing much they can do , further chemotherapy its not going to make any difference to the outcome, you”re bascially at the end of live care and if whenever you”re going to end up in intensive care or not breathing ,emgergence team are not going to resucitate you ! i find this so cruel and horrible to take in .is this how NHS works ?

I feel my husband has been through so much and he is still fighting on . despite trying target therapy at the beginning and four different kind of chemotherapy and immunotherapy treatment and recently had 10 intensive round of WBR all this in the past two and half years since diagnosed with NSCLC stage 4 lung cancer and in the last six month with progression of brain met.

He was told he only had months to live back in January 2020 and again told less than 6 months in Nov 2021 and again in March 2022 . We’ve been told his prognosis once too many times , i find it hard to belief when its the right time to believed them .can consultants really predict a patients prognosis ?

I”ve had mixed feelings in the past week ,not sure what to think going forward , doctors are suggesting to us and to hubby whether he wants to carry on with more chemotherapy or just treat whatever symptoms the body produces .

anyone in the same situation please can give me some advise what choice have we got ? Thank you , God blesses 🙏

[Caspiana]

Hello Ace, 😊

I am terribly sorry to hear about your husband's condition. It sounds like he has been through so much. To be honest it is very hard to give advise about choices, especially such serious medical issues that your husband unfortunately has, as we are experts all in our own way but only about ourselves and our own condition. and are not medically qualified.

I do have one question for you. What does your husband want?

Cas xx 🙋

[Ace467 in reply to Caspiana]

Hi Caspiana , thank you for reading my post and your quick reply to me .we all want my hubby to live as long as possible, his still young . my hubby will want the same too. He has tolerated all the worst side affect and stayed positive throughout , he”s a fighter ! stopping any treatment is like waiting to die .

[Caspiana in reply to Ace467]

He has been given the option to continue chemotherapy. I am no doctor, but reading between the lines they are asking him if he would prefer to stop, does this mean he is not getting the desired results from the chemotherapy? From what I know of chemotherapy, it is pretty brutal on the body, and for some it actually hastens the dying process if it is not actually tackling the cancer.

[Ace467 in reply to Caspiana]

Good morning To you .we’ve been told all the past treatments are on and off . It’s like trying out which one work. My husband was diagnosed just before the pandemic, so everything was very slow . I’m not complaining , he’s still here with us two n half years on .

But I’m so scared now and worried where the next step will take us .

[TomTitTot]

I would say, continue to have hope.

It really bothers me that when physicians feel powerless to cure immediately, they also forget to leave us with hope.

Hope has great power.

🕊Anne

[Ace467 in reply to TomTitTot]

Thank you TomTitTot , you’re right ! We relied on physician to guide us medically . We believed their words for comfort and hopes . We’ll not or my husband will give up if there’s still treatment available.

[Patk1 in reply to Ace467]

Does hubby have macmillan nurses and palluative care? X

[Ace467 in reply to Patk1]

Yes , it’s just recently all this is put in place .

[Patk1 in reply to Ace467]

Great x

[Katinka46]

I am so sorry you are both going through such a distressing time. I cannot add any more to what our wise Caspiana has said. K xxx

[Ace467 in reply to Katinka46]

Thank you Katina46 For reading my post , it has been tough , I hope you’re well , have a nice day ❤️

[sassy59]

I can’t offer advice but just want to say I’m thinking of you both. Hoping your husband has some quality of life for as long as possible. Xx💕

[Ace467 in reply to sassy59]

Good morning Sassy59, thank you for your kind words. ❤️

[Nimrod2]

Hi my late husband had SCLC and we got to the stage where chemo was stopped as it was doing more harm than good. I can completely understand how you feel. The shock is huge. I agree with what is said above that you and your husband need to talk about what you want to do. I wonder if you are in touch with Roy Castle Lung Foundation Trust. They have a page on here too. I found them a huge support during my husbands illness and they have great expertise in options re lung cancer. I wish you all the very best . Sue

[Ace467 in reply to Nimrod2]

Good morning Nimrod2 , sorry to hear about your husband too . thank you for your understanding. I’ll look up on this . Have a good day ❤️

[Nimrod2 in reply to Ace467]

Please do. It is a fantastic charity.

[Cloudancer]

Cannot add more to the brilliant replies on above.Would reiterate what would your hubby want?

What a distressing situation for you-do you have support to help you emotionally and practically?

Thinking of you please let us know how you get on.

[LissacFrance]

Very sorry to hear that. Over last few years I`ve lost 3 close members of my family to cancer. Mesolthelioma, Glioblastoma and last year my sister with Liver cancer secondary to cancer of the colon. In all 3 cases NHS treatment was brilliant, although I suspect late diagnosis for my sister was in part due to Covid situation. Thanks to tory government and stupid brexit ideas, the NHS is really struggling due to lack of investment and lack of staff. Prognosis is difficult so try not to be too hard on consultant. People react differently to treatment, and diannosis does not always run on time. My nephew was given 8 months but thanks to clever surgeon and new technique this was extended to almost 2 years, until metastasis deeper in the brain. At which point he and family said, no more. he enjoyed last months of his life without further active treatment and finally palliative care in wonderful hospice.

Good luck, take care of yourself, Chris.

[Ace467 in reply to LissacFrance]

Dear Chris , thank you for your thoughts on this . I’m sorry to hear your sad new too about your family. Too many people are cutting their life short because of this deadly disease . I fully understand what the consultants are saying , they’re just speaking on the financial side.

Not everyone can afford private health care , so we’re the ones that don’t get to choose to find better treatment or prolong the life of our love one . I feel as thoughts we’re push out of the system when you reach this stage .

God blessed us all on this difficult journey.

Amen 🙏

[gardenalan]

Oh it is so hard for ye and I’m really sorry but I must tell you my brother in law was sent home to put his affairs in order 12 years ago and he is still here and living a relatively good life try and not look too far ahead and live every day as tomorrow is not guaranteed to anyone xxx

[Ace467 in reply to gardenalan]

Hi , no body understands your pain and stress , Unless you’re the one suffering. There is so much in life that we look forward to do once we retire maybe in 10 years time . . …Travelling , seeing our children getting marry and our grandkids growing up .

Non of this will happen and it’s just unfair.

[Ergendl]

Oh, what a difficult situation for you both. Just wanted to add my support for you, whatever the decision you and your husband make. Praying that in spite of what the consultants say, things will improve.

[Ace467 in reply to Ergendl]

Hi Ergendl , thank you 🙏

[Izb1]

I am so sorry to hear your news and feel sad that you have been treated badly. I cant advise what you need to do as that decision rests with you and hubby. I do know how shocked I was was when Mum was diagnosed with kidney cancer, it was so matter of fact with no care shown to your feelings. Nobody can tell you how long you have got left just enjoy everyday. My thoughts and prayers are with you x

[Titchykath]

I am so sorry to read your post , I hope you and hubby can enjoy life , even if it’s only little things . Take care 😘

[Ace467 in reply to Titchykath]

Thank you, God blessed 🙏

[katieoxo60]

So Sorry Ace467 to hear your sad news, speaking from experience one quite recently it is usual for the medical multidisiplinary team to ask what the patient would like . In many cancer cases the patient usually knows in themselves , relatives often know when the time has come and no more can be done. If Chemotherapy is still an option , then it has to be your hubby's choice sounds like what they are saying. Always remember don't take away hope but final decision has to be your husbands choice, but I trust the medics are involving you and making your husband aware of how they can treat the symptoms to keep him comfortable. Sadly this is one of the many decisions in life no one wants to have to make , my thoughts go with you , your husband and family I recall thinking in a similar situation , what will be will be and this is not what my relative would want, so your thoughts are not unusual . Treasure the time you do have , time can so easily be lost in worries x

[Ace467 in reply to katieoxo60]

Hi Katie, thank you for your reply, it’s really great to hear from your past experience in this matter .

[Damon1864 Volunteer]

Hello Ace467 I'm so sorry to hear about your husband and the struggle you have both been through. I can add no more than what Cas has said, but you and your dear husband definitely need to talk. My thoughts are with you bothi hope you have your dear husband with you for a long time yet. You have a good day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻💖

[Ace467 in reply to Damon1864]

Thank you to you both for your kind words. I’m the advocate for my husband as his English is not his first language. So it’s sometimes hard to explain everything to him coming from me .

The consultant is giving us the next two weeks to think it over and they will get an interpreter to go over everything with him whether he wants to stay on chemo treatment or withdraw from it .

[Damon1864 Volunteer]

I hope everything goes well for you and your husband I will be thinking of you both God Bless you both Please keep us updated take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻🌹💖