Incurable cancer - need hope

[RonnIeAl77]

After having a stage 4 rectal cancer diagnosis and 5.5 weeks of chemo radiation last autumn, there was still some disease so I had to have an APR in July. I thought having a stoma was the worst of my problems. Now it’s spread to my liver and due to where it is, liver resection is not possible. I was told last week it’s incurable and the median life expectancy is 20 months. I started chemo on Friday, which I’ve been told is pallative. I’m broken. My girls are 10 and 14. I’m 47. My husband and I are more in love than ever. Trying to keep Hope with private liver transplant (family donors) and private immunotherapy. This feels like I’m writing about someone else. My family and friends, husband are amazing. I just don’t know how to put one foot in front of the other some days. Everyone tells me how brave I am. All I can do is hate myself for not recognising symptoms earlier. I am jealous of everyone else’s problems. How do I do this? Anyone experienced a miracle? Or experience with private clinics or immunotherapy? Thanks in advance

I didn’t want to read without saying I’m so sorry.

My mil has had 2 years of immunotherapy for metastatic liver lesions (they were on the posterior of her liver so unsuitable for surgery) and is currently NED.

I am Catholic OP and I do believe in miracles.

If I were you I’d go to Lourdes on a pilgrimage. I have heard anecdotally of various healings there.

Please ignore if this doesn’t appeal.

PS It’s not your fault: it’s really understandable that you blame yourself but it’s really, really not your fault.

Hi lovely, there are lots of YouTube channels where people share their cancer journeys. I hope that could be helpful for you to watch and feel less alone. I don’t really know what else to say besides I’m sorry.

I am so sorry you have been caught by this brutal and cruel disease OP.

It is heartening to hear of the love between you and your husband. Sending every best wish for the potential of a family liver donation and / or immunotherapy.

Whatever the future holds the love in your family is a lifelong gift and strength for your children.

May the light shine on you with hope for medical treatment and miracle.

I just want to give you a massive cuddle. I will keep you in my thoughts and I too will be praying for a miracle. Xxx

Have you thought of a clinical trial.
My mum had ovarian cancer. Was given weeks. Had chemotherapy and went on a trial. She lived nearly 8 yrs from original diagnosis.
She recognised the symptoms but her GP said it was IBS or just her age.
Cancer research website has trial info xx

There is a thread on Mumsnet that you might find supportive for people who have stage 4 cancers. I’ll try to find it and link. I’m sorry you and your family are going through this.

https://www.mumsnet.com/talk/life_limiting_illness/5361108-thread-6-living-with-incurable-cancer-taking-all-the-drugs-and-remembering-our-fallen-comrades?utm_campaign=thread&utm_medium=app_share

I'm so sorry you and your family are going through this. I have heard positive stories about immunotherapy too, so I have everything crossed this works for you too.

Sending you all a huge virtual<<hug>>

So sorry you are going through this. You sound like you are blessed with a lovely family. Lots of people love far above what is estimated. My Mum's friend was given 3 months to live and survived 8 years and was in good shape right up til the last couple of days. I hope you can find some suitable treatments x

Sending so much love to you OP

I’m so sorry you’ve so much to cope with. Please don’t hate yourself or blame yourself. It won’t help and will sap you. Focus on the fabulous family you sound like you have. Sending you strength and hope.

Sorry you're going through this, @RonnIeAl77 . Amazing to hear of the family liver donor - didn't know that was a thing.

Where are you going for your immunotherapy and what kind are you getting? I heard about this place in London recently and was impressed. Are you well enough to travel? More options if so.

Can't add to the fine advice here but I am so sorry to read this and I too will pray for you, your girls and husband. It's not your fault. 💐

I’m so sorry that you are having to deal with this. There are no answers really. You have to just go through it and see what helps. Some people find it useful to seek out others going through the same thing and other people can’t deal with other people too. It must be so difficult with your kids. They are so young. You might find a counselor useful and maybe you can think about one for your girls. Maybe later.

Some people like to get everything in order quicker so they don’t have to think about things too much later on and others don’t.

I don’t know how you feel about being called brave. It’s a common thing to say but I wouldn’t say it myself. You need to try and workout what suits you and let people know.

I hope things go as well as possible.

Never give up hope, and ask Macmillan nurses for help and support. I have survived cancer but it wasn't stage 4. However, I was diagnosed as being terminally ill five years ago, and given a prognosis of months to a year or so. It wasn't for a cancer-related condition. I have not made a miraculous recovery and I am functionally disabled. However, I am still here to the flabbergasted astonishment of the medical profession. I suspect one reason is a refusal to accept the prognosis and keep seeking second opinions. I went on to have some more treatment and more surgery etc. I am not sure if that helped to keep me alive, or if the original medical team misjudged the clinical situation (in my case it was for a very rare 1 in 2 million diagnosis so they had little in the way of evidence to go on). Your cancer is unique to you, and you should explore all treatment opinions, trials and second opinions from different oncologists. You should get help from any reliable sources available to you, so you can make informed choices. I am very sorry you are faced with this, especially with having a young family at home.

I am sorry you are in this situation.
I know someone who is over a year NED from stage 4 cancer after immunotherapy, so there is hope. Have you looked into whether there are any trials you can participate in?

Sending you lots of love op x

@RonnIeAl77everything you have written resonates, the initial shock of a stage 4 diagnosis is very difficult especially when you are trying to keep things as "normal" as possible and still try to navigate life for the sake of your young family.

The truth of it is, at some point you will accept this as your new normal. The palliative treatment you will receive will hopefully help to keep you going and if there is any sign of remission on the treatment then you will 100% be taking that as a win.

Macmillan have a buddy scheme where you are partnered with a volunteer who has (had) a similar diagnosis to you and can help you navigate the world of cancer, have a cry with them if things go tits up, celebrate the small wins or just talk about mundane stuff, one hour of no judgement from a stranger once a week for 12 weeks.

There is a life limiting board here on Mumsnet and people are welcoming, you will get a handhold there although the board isn't just for people with cancer. There is a small core of posters who post regularly and a few who dip in (like me) and very occasionally there is a post that a PP has reached end of life or died and it can be sobering all over again.

I wish you the very best of luck and sending you strength to get through your treatment and to keep going comfortably for as long as possible.

I am really sorry to read this - a desperately unfair situation to be in and like everyone else, I hope you get your miracle.

Is the below helpful to read? I don't know as it's a different cancer. But posting just in case it is.

My friend (same age as you) was diagnosed with stage 4 breast cancer in 2018. This cancer had metastasised but to her bones. She has been having palliative chemo ever since and is currently NED.

She was given x amount of time to live by her consultant - and she has long since passed that time scale, still here, happy, thriving and enjoying every precious day with her kids.

Wishing you the same success X

You sound absolutely fabulous, keep being amazing and shining in your life and family....people DO beat the odds, keep the faith xxx

I am so sorry to hear this. Please stop blaming yourself though. You’ve got some time so focus on using it with your lovely family. Make plans and do as much as you can. I lost my mum earlier in the year to liver cancer , we had 17days from diagnosis , she was absolutely fine before, none of this is your fault for not noticing. My mum didn’t notice a thing. It’s a right bitch like that cancer. I’ll be thinking of you and your family

My friend is 3 years on from an incurable live cancer diagnosis on nhs funded immunotherapy - he’s no longer got yellowish skin, he’s full of energy and enjoying life. He know he cannot be cured but the “x months” death sentence has been lifted and it’s considered currently to be chronic.

speak to your specialist to see if you qualify, he’s in a clinical trial. There’s lots a variation in cancer so it may be worth crawling through literature online to see if there’s other trials too. Please though be aware that thousands of people live with cancer these days but can’t be fully cured, the aim is simply to live a normal lifespan