Dad has incurable cancer

Hello Glitterbug90.

I am sorry you find yourself here, this silent and rare cancer is vile. I am not an expert although I have read everything I can find on it, I can only share what is happening with my beloved husband, he was diagnosed to late for any surgery, was told he secondaries on liver and some swelling in lymph nodes. They said he had 6 months to live but chemo could extend his time. He had 3 chemo and then he had 5 weeks off  due to risks of covid. He was violently sick each time and then just tiredness. 

He went back to chemo on Tuesday and is now very ill in hospital with sepsis and may not make it and my heart is broken, he is 61.I know at some pint I am going to lose him anyway but the suffocating pain is there always. If he gets through this, it is highly unlikely that he will be given anymore chemo

You need to know that every single person has a very different reaction to chemo. Some people are never sick,bht have other symptoms that he didn't. 

Also people live years past their given time and some less. You have to talk with each other and your oncology team macmillan nurses, get as much information as you can to make a decision. Ultimately though the decision has to be your dad's, it's his body. I hope my husband doesn't have any more treatment, my world will be desolate without him I am crying typing this but watching him suffer iwith treatment knowing it won't save him is breaking my heart. I wish you and your family all the luck in the world with the decisoyou make. Love and best wishes Christine xxx, 

Dear Glitterbug90,

I have been up against bile duct cancer since January 2018. I had my Whipple surgery in June that year but the cancer had already spread and I’ve been on chemotherapy and immunology trials since the operation.

In March 2019 it had spread to multiple parts of my torso and my oncologist told me I only had 2-4 months left,  that I should book into a hospice And “sort out my affairs”.

What was made very clear that once the cancer had spread is that chemotherapy was only for palliative care - chemotherapy is not a cure, but it can buy precious time. 

So we’re in June 2020 and I’m still here. I’ve no idea why, we all have a different path. I am grateful for each extra day I’ve been given to spend with my family. We talk about a lot of things. I worry about leaving them behind, they are worried about what’s going to happen to me. But we talk and give each-other comfort and know that it’s going to be difficult, but accept that. We still laugh, have fun and spend wonderful moments together, which can be as much about sitting in each others company reading or watching the TV as it is having a day out together,  

I’ve lost my mother, father and sister to cancer over the last drew years. I know what I’m up against but I am doing what I can to make the most of my relationships and friendships and I always have hope.

I wish all the best for you and your dad.

Hi Christine 

Thanks for you reply.. I am so sorry to hear about your husband it's an awful disease.. I hope things are looking up?

Dad is doing OK at the minute his main side effects from the chemo is tiredness and a bit quezy but thankfully he hasn't been physically sick. He was at the cancer center here this week and his bloods showed up normal along with his blood pressure, temperature etc he is also mainting weight. 

The big one is in 3 weeks where he will get his scan we are all hoping that the chemo is doing its job and containing the cancer. 

Hi Andy thanks for the reply.

Wow that's amazing considering I hope you are doing well.

Dad is doing OK at the minute his main side effects from the chemo is tiredness and a bit quezy but thankfully he hasn't been physically sick. He was at the cancer center here this week and his bloods showed up normal along with his blood pressure, temperature etc he is also mainting weight. 

The big one is in 3 weeks where he will get his scan we are all hoping that the chemo is doing its job and containing the cancer.

Thank you again for your message. 

Hi Christine 

Thanks for you reply.. I am so sorry to hear about your husband it's an awful disease.. I hope things are looking up?

Dad is doing OK at the minute his main side effects from the chemo is tiredness and a bit quezy but thankfully he hasn't been physically sick. He was at the cancer center here this week and his bloods showed up normal along with his blood pressure, temperature etc he is also mainting weight. 

The big one is in 3 weeks where he will get his scan we are all hoping that the chemo is doing its job and containing the cancer.