Scared partner

Hi Happy Camper,

how are you and your husband doing now??

we await private MRI results today.

louli xxx

Hello Louli and other prostate other halves. My dear Ian died last Thursday but I have been thinking of you all and turning over what to feedback that you might find helpful. Sorry it’s a very long message!

First of all, what happened. He had had all the treatment possible earlier in the year, including radiotherapy for 2 spinal cord compressions, skull mets and skull base mets, so he really had been through the mill. He was temporarily out of it on Christmas eve/day (I think with a brain bleed) but did recover to find some joy afterwards in having all the family round and seeing some very dear friends. Then he developed severe anaemia which wasn’t acted on quickly enough (new year etc) but frankly it wouldn’t have made much difference.

Thanks to our wonderful palliative care nurse, who basically told everyone in the system what to do and made sure it happened, he was booked in for blood transfusions but before he could have them he deteriorated (semi-conscious) and I called an ambulance which came very quickly, and he was quickly treated in A&E which gave him transfusions. Unfortunately he then got stuck in A&E but the palliative care team took over and made sure he had appropriate treatment, and eventually got him moved to the adjoining hospice which was wonderful. He had a syringe driver and they pumped him full of  morphine etc and after 3 days in the hospice (and a couple in a & E) he died very peacefully and with us all by his side.

On the spiritual side, we are not really religious, but a chaplain at the hospital came round and really was very wonderful – his last lucid conversation. And the chaplain at the hospice too was there for us. I knew before A&E, that Ian was ready to go, which is helping us all to accept it. Say what you need to say early, and encourage others to do so – I hadn’t appreciated how quickly he would deteriorate and how out of it he would be, but there is peace at the end.

On the practical side, Ian did get agitated at times when semi-conscious, which was distressing, but they gave him medazallam which dealt with that, so do let people know if your loved one is agitated or if you think he is in pain – they can deal with that. And in every department, there are some really excellent and nice staff – I take my hat off to them. If you get someone who isn’t so good (perhaps someone inexperienced on their first night, as we had!) try someone else. But trust your instincts – being with someone every day, you know when something is wrong, so seek help from your local palliative care nurse, district nurse or hospice. The only regret I had is that I didn’t say more strongly that I suspected anaemia earlier on – though it would have made no difference in the long run.

I hope this isn’t too much detail, we are all different in what we want to know and how things develop but I found people were  frustratingly imprecise in sharing happens at the end!  I do hope you manage to get some treatment for your loved ones which makes things easier and gives them some more happy times. If you want to ask me anything else feel free to message. Best wishes and hugs to you all

Dear Happy camper, so sorry for your loss, and thank you for your description, it does give me solace, I knew it could be done but you have reassured me, tough days ahead but we are still here for you x

Oh my friend I am so sorry to hear of your sad loss and I hope the happy days you shared together offer you comfort.

Thank you for your help with the end stages you experienced and hospital advice for us all. The holiday season is particularly difficult to navigate through the NHS and you did him proud in not giving up and getting him the best of help in his passing. 

Reading your message has given me great insight which will be useful and I thank you very kindly for  it.

Sending you much love and blessings,

Louli xx

Thank you for your compassion and kindness at such a time of great loss. It helps to know what may or probably will happen. It is so frightening and I want to do the right thing. I don't know you but I feel a solidarity and a deep sense of kinship and wish you courage in this next phase.