Nothing is working ,so scared

Hello Tina 22 

I am so sorry to read your post and to start off I need to have a think how to give you a full reply. If you don't mind I will "tag" a fried to this post Alwayshope and she will have a better answer than me, In the meanwhile can I ask you to post your husbands full diagnosis TNM score - Gleason Score and initial PSA.

I will be back to you. - Thanks - Brian

Tina, you have been dealt a very bad hand and by all accounts your medical team have let you down by not supporting you when you needed help.  In this blog there are people at all stages of their own journey and we will all try and help you.  Best wishes to you both, David

So sorry to read your post and that you feel there is no support. Have you got a Maggie's centre near you as they have been so lovely with us

Hello Tina.

I am so sorry that you have been told that your husband's cancer is no longer at the treatable stage. It's something that all of us dread, but know that it is something my husband and I are going to have to face as he is also working through all the options. I must admit that I am appalled that you have just been sent away and told to get on with it. This is the time when you need support more than ever. There are many places that can help with the palliative care your husband may need as well as giving you the physical and mental help you might need to deal with things later on. There is a separate forum specifically for those having palliative care but also Macmillan's may be able to help. I have put a link here for you.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life/being-cared-for-at-home

I would also suggest speaking to your GP and see if they can refer you to a local hospice. They are not for the dying but are there to help you cope with any of the side effects but also to explain to you what is going to happen and what support you should get. 

Your local area may have a Maggie's which is a good source of support.

Can I also say that even though treatment has now stopped, death is not imminent but it is a time to put things in order like wills, access to personal information that may be held by your husband personally on his phone etc.

You are not alone, just on the final part of the journey and amongst friends here who understand what you are going through so keep posting and asking questions. I am sending you a big virtual hug.

Hello Tina, I am so sorry to hear about your experiences. The replies you have received so far provide you with various options and I hope they will lead you to getting the help you need. In addition, I am wondering whether you have a prostate cancer specialist nurse team? I am also wondering whether you are in England? If so, I can give you more info on how to go about getting help etc. I think Wales and Scotland NHS services have slightly different ways of doing things?

Hi Tina.

My husband has just made a very valid point KEEP FIGHTING. It has made us think about what we will do when we are told we have run out of treatment options. Also enjoy each day as it comes and build the memories plus fulfill your bucket list if you can.

Milliob he's gleason 9 grade 4 spread to bones , psa 24 diagnosis now 234 never been low in the 2 years diagnosis 

He's still on enzalutamide but told probably be stopped , tbh he hasn't got much of a life ,since chemo his mobility is bad can only stand now has pain so enjoy life is difficult,  he tries to keep spirits up , he has nurses and there's talk of palliative intervention but not heard anything yet , , he sees the district nurse once a month fot hrt, definitely been dealt the bad card 

Hi Tina.

The idea of palliative care is to review his medication, particularly pain relief, and develop a regime which gives him a better quality of life. Do you have anyone to talk to about how you are coping. It is not all about your partner

Hello Tina 22 

Thanks so much for the information. Again I am so sorry for you both, as others have quite rightly said, keep fighting.

Can I make some suggestions-

* I am tempted to return to your oncology department and ask about any clinical trials your partner may benefit from.

* I would ask about bone-marrow transplants - but I don't know enough.myself.

* We have another forum where you may find additional support and the link to this is here Supporting someone with incurable cancer forum 

* Help is available from Marie Curie - 0800 090 2390 (Monday to Friday 8am - 6pm) or www.mariecurie.org.uk

* Also Hospice UK 020 7520 8200 - www.hospiceuk.org.

* Don't forget to look after yourself - Carers UK for information, financial and emotional support 0808 808 7777 (Monday and Tuesday 10am - 4pm) and www.carers.org.uk

Our helpline on 0808 808 00 00 is also open 8am - 8pm 7 days a week and they are amazing at pointing you in the right direction for extra help and services.

Let me know if you need anything else and I will see what I can do for you.

Remember it's OUR Community and We look after OUR own - and you are one of US.

Best wishes - Brian.