Metastatic prostate cancer, MSCC and bone metastasis

Hello Teatowel 

Thank you for taking time to update us here (I have read your posts on other groups on the Community). My initial thoughts are as follows - I hope others who read this can add to them:

* Your husband needs a face to face with the oncologist so they understand the present situation. If the local NHS will not provide transport to the hospital - if you have a local Macmillan centre or a "Maggies" they will know of any local transport services who can help to get him there and back.

* Has he had an assessment of his needs - link here:

Getting A Needs Assessment.

* Have you spoken to our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week). They have plenty of links as to how you can get help and support.

I hope the above helps.

Best wishes - Brian.

Hi Teatowel sorry to hear about your OH.  If he doesn’t want to go to hospital, that is his choice, so I would suggest he tells the oncologist just how he feels.  Since Covid, most of my appointments have been by phone and realistically I don’t think I miss out much.  Whenever we need to talk about new treatment or when my PSA rises, I try and get a face to face.  When things are ticking along, the phone calls seem to be adequate.

What questions to ask?  Well that depends on what is happening.  Firstly, do you feel you are currently up to date with your understanding, if not then ask.  If things are changing, I want to know what options are available and what outcomes are likely with each.  Is there anything I can do to improve things and finally what to expect next.  I never feel pressured and if I need time to think, my team are very good about it.  Please come back if I haven’t answered your question or you have any other concerns,

You sound frazzled!

Get a cup of tea and organise your head into what you know you can do (and can’t) and what it’s possible to do (and can’t).

Write down what you want to say and do. Write it and you won’t forget it.

Now you have read Millibob ‘s post and info, you know more. So renew those lists and write the telephone number down.

ponder the new info over another cup of tea (or coffee)

chat to your hubby, and add and adjust the list to include all his thoughts.

sit back and feel the blood coming back to your fingers and toes. Eat and drink some more. You need strength to do the next bit.

You will now have a gut feeling for what your hubby wants.

You will also have a gut feeling about what you hubby needs. So now get cracking on getting what he needs.

We are here all the time so lean on us.

The information here is immense but you’ve got to ask the right questions.

You need strength and confidence to break down those NHS walls and then you will find the help your hubby needs.

Good luck

Hi Teatowel . David has covered the main questions well but keep a written record of those and add / amend as time goes on.

I think there is a subtle difference between palliative care and end-of-life care which you might want to look into and discuss further. Your oncologist is probably only interested in / responsible for treating his cancer so would probably only refer you back to the GP for that. But it’s certainly worth asking the question. A friend had visiting palliative care for a similar cancer spread causing pain, which was later stopped when he was able to manage it himself. He said he thought there was only one way palliative care stopped, clearly there wasn’t!

Is a care package on the horizon too? If so, that’s something else you might want to start looking into, if you haven’t crossed that bridge already.

Frustratingly you do have to push sometime to get on a list and make progress.

Hello Teatowel

im really sorry to read of your situation. I have a few thoughts and hope they might help in some way?

importantly, my understanding is that end of life care is the care given to someone as they are approaching death within a shortish time. Palliative care is the control of symptoms ( such as pain or nausea and vomiting) to improve the quality of life for someone with an incurable diagnosis. Are you and your GP talking about the same thing?

if your husband is incontinent and bed bound I assume you are responsible for a lot of his care needs? This is relentlessly hard work. Are you getting the help and support you need - including attendance allowance, carers allowance etc?  If not, can I suggest your local social services department ? Everyone is entitled to free assessment of care and financial needs in England, I believe?

If you are in England, every local authority has a Healthwatch service who can help you with navigating through a complex health and care system. Might it be worth contacting them to see if they can help you?

I am wondering what your husband’s thoughts are about telephone consultations and the questions he might want to be answered? My husband is, to put it mildly (!!!!) very reticent to talk during his consultations. His opinion is that doctors are gods and should not be questioned! So, what I now do is talk to him before the appointment to find out what he wants to know. I add his questions to mine  and then print out a list - one copy each! ( if it’s a face to face consultation, I give one to the consultant too!) This means we ask the questions that are relevant to both of us - a sense of some control and order  in a particularly uncontrollable situation!

The shift to digital or telephone interactions with the NHS is not welcomed by everyone. I also don’t like the fact that, when wanting to see or speak to a doctor, we have to go through a ‘care navigator (two new words for receptionist?) . What I have found, though, with my own surgery is that the on line consultation form allows me to say exactly what I want to say without worrying about what the mood the care navigator is, whether messages will get passed on accurately etc. I also get a response within 24 hours although they do say this can take up to so many days.  ( Also, whatever you say is on yours - or his- medical records so there is no room for neglectful care) . Have you tried this?

i hope i have helped and not added to your stress

i wish you the best of luck and your husband the best of care x

Hi David, Thank you so much for your support and suggestions. My OH is in denial so it is a challenge to get him to ask questions but I will definitely try to prompt him and ask for time to talk to the oncologist. Sending grateful thanks xx

Hi Worriedwife, thank you for all the helpful advice. It is so important to know that people like you are out there and willing to listen and share with people like me; scared and anxious about what is happening and how to ‘navigate’ each stage. Sending appreciation and gratitude to you xx

Can your husband use a wheelchair?

If he can, and has one, you might find that there is a local community transport Charity that can get him to the hospital.

It does as if someone needs to see him to understand his position.

Your local council might have a list of local charities who can help on their website.

If there isn't try Citizens Advice.

Just thinking through this a bit further. If anyone cannot physically able to get to a hospital appointment they are entitled to Non- Emergency Patient Transport ( NEPTs). I think your GP practice can arrange it but not sure. Perhaps worth googling this to see if you eligible?

Hi Teatowel we all react differently when given our diagnosis.  Denial is very common with men, it is a lot to process and some just can’t handle it themselves.  I am sure that you will be able to ask all the questions on his behalf, so a face to face meeting makes that much simpler.  Over time, he may accept more himself.