I'm reaching Breaking point! Is this the end?

You will need palliative care. The oncologist will refer you when the time is right. Make sure the GP visits. 

Truly sorry for what you are going through, my mum is going through the same with my dad and it’s incredibly tough ️️️

Hi Claire,

My wife has LMS and it’s now at stage 4, like you we didn’t want a timeline either, she sleeps most of the time as she’s on pain patches.

I would suggest a community nurse to take a look at him, and see what help they can offer, they may well suggest the hospice for a short while to get his medication at the optimum rather than just giving him morphine.

Once my wife was moved to a hospice from a hospital, they straight away took her off morphine and tweaked and adjusted her pain relief, she’s on Fentanyl patches which get changed every 3-4 days, and they work a treat.

Please try and get some rest when possible and feel free to message me on here, I hope you have some positive news after the latest chemo.

take care,

Andy

Hi Eddie

So sorry for the journey you and your eldest are facing, I can't imagine the double whammy

I have managed to speak to his specialist nurse this morning after 3 voicemails left for her. She has arranged for the District nurse to come out today and take some bloods from him and to help support me. 

The issue I have is that he is still very lucid when he is awake and adamant that he doesn't need more than I am able to give him. His nurse has said today that she will put it across in such a way that the help isn't for him but for me to make him try to accept it. He thinks by having the help or aids that it means the end which he isn't ready to face either. x

Hi NotEatingEnough (I can relate to your name)

I tried to speak to his GP and was told that he is under the hospital. Feel like I have had a massive run around trying to get some help.

We aren't due to see his oncologist until 30th but after speaking to his nurse today, she has arranged for the district nurse x

Hi Always Hope

Whilst it's not easy for your Mam, it's also not easy being the child (even if adult). You will need some support too.

I was in my early 20s for my Dad and so when Hubby was diagnosed, I wrongly assumed I would be fine. 

Sending Hugs x

Hi Andy

Sorry for what you are also going through. 

We have a district nurse coming at some point today and I will speak to them and see what they can suggest. He is very anti-help as he seems to think that if we have it, it means that's it, give up time. His specialist nurse and I spoke this morning and has decided to put it to him that they are more for help and support of me, rather than him to make him more accepting of the idea. She has also said that if he doesn't improve then he wouldn't be strong enough for next treatment on 31st.

His pain is now managed with the morphine so not sure they will change but worth an ask as they sound like a game changer. They are taking bloods today to see if a transfusion would help.

Claire x

Thank you Claire, and It's nice to hear you have the district nurse onboard, his nurse i right in that you need support too, I hope you are looking after yourself as well, I have been the carer as well and it's just as hard as being the patient. take care.

Eddie xx

The GP needs to see them (or the hospital) to ensure that things go smoothly at the end and no need for post mortem. I think GP only required if at home. 

I am sorry for your situation.

I am actually crying right now as it brought everything back to me. 

Hello ClaireJo I hope it went well with the nurse? Just to second what Andy said about the Fentanyl patches. My husband had those (changed in his case, towards the end, every 48 hours. But he also had quick acting morphine pills and paracetamol for any breakthrough pain. Together they all worked brilliantly for him. He had no pain at all, and  he died quietly, peacefully with no struggle. He was active, eating and drinking and generally just ‘himself’ until the last 36 hours before he died. 

Warmest wishes to you