What am I allowed to know/ask?

FormerMember over 5 years ago

7 replies
38 subscribers
8189 views

So we have this diagnosis and treatment will begin soon. We know it is incurable. As is to be expected, all the attention is on the patient, but as a carer... what about me?

Am I allowed to talk to his doctors to find out the answers to questions no-one is addressing? Partner tells me very little and isn't ready to talk about everything yet, (he may never be as he has been like that all his life) and that is his choice, but I feel like I need to know. I want to ask 'How long has he got?' and How long before I am a nurse rather than a partner?' and 'Who do I turn to for advice and help?' and 'How much can I talk to his nurses (who I haven't even met yet) and 'How much are they allowed to tell me?' - respecting his privacy and choices as they must.

I feel like I am on the outside, the details being on a need to know basis and like a decision has been made that I don't need to know. I don't have a network of friends or family. Partner and I have been friends rather than lovers for a good ten+ years and I just feel adrift, in a swirl of questions to which I have no idea how to get answers, or even if I can.

Does any of that make sense? Can anyone tell me where I should turn to help make things clear? Sorry for thr ramble, but thanks for any help offered.

panic over 5 years ago

As a carer, it is your God given right to become the most annoying, demanding SOB ever born.

Ask away and don't stop asking until you have gotten answers you can understand. Don't allow the medical team to muddle you with medical terminology. If you don't understand, ask them to repeat in language you can comprehend.

Doctors and oncologists are not above reproach. I have enormous respect for their knowledge and dedication, but.... Occasionally they need to be reminded that 4 bucks and a medical degree still only gets you one pint.

The unknown is the best incubator of fear and fear is the greatest of all ways to erode the relationship you had at the start of this journey.

Ask. Ask. And ask again until you and your OH satisfied with the answer.

Talk all of this over with your OH. Let him know you're feeling left out. Remind him that there may come a time when you will be responsible for his well being. He needs you onboard now and you need to develop the knowledge and confidence that will stand you in good stead further down the track.

The two most important people in this fight are you and your OH. Don't let cancer or fear become the barrier between the two of you. Your both in this fight together.

Peace, Ewen :-)

The day after your carers journey ends, the sun will still rise.

As will you.

FormerMember over 5 years ago in reply to panic

Thank you for taking time to answer and for your advice.

Vulpes over 5 years ago in reply to FormerMember

My husband doesn’t always want to know too much detail. I sometimes ask questions at the end of an appointment when he goes out before me, and sometimes I email or call our oncologist directly when I want to talk about something I know my husband won’t want to hear. Its a tricky balance to achieve. I just keep reminding myself, I’ve had no training at this, there is no reason for me to be good at any of it! I am feeling my way, and doing the best I can. That surely, is the most anyone should expect from themselves. Sending you strength and ability to endure.

FormerMember over 5 years ago

I can only suggest that you speak to your partner about this explaining that if he wants you to care for him you need to know what you are dealing with and hopefully he will see reason and accept it at this stage you should have prepared a declaration signed by him that he authorises the doctors and nurses that you are to be kept informed and have any questions you have answered. Take a few copies of it so that after the declaration is in his notes you can produce if someone gets a bit uppity about you asking questions.

Being a carer is a big responsibility and can take over your life leaving you very exhausted , you must always try and have some ME time if not daily certainly every other day.

You should also register with your GP that you a carer and you should get some priority service for your own appointments.

Macmillans have an online book that you can download HERE (just click on the green text and the page will open up for you).

You know you can always come on here for a chat, or to have a vent and and let off steam, this is a very safe place to come to as everyone understands fully how you are feeling and will not judge you.

If you would like to ask our nurses some questions you can do this in two ways

1- By going on the Ask a Nurse page and ask questions, or

2- By going on our Telephone Support Line and asking to speak to a nurse, the number to call is

0808 808 0000

If you have any non medical questions whilst you are on the support team can assist you with any problems you maybe having such as financial.

The friendly team are available every day of the week between 8 am and 8 pm.

I thoroughly agree with the other comments that you ask and keeping asking about your partners condition and you need answers to be his carer.

Please keep in touch with us even just to pop on to say hi or to have a moan.

Ian

By clicking on any of the green text above will open up new pages for you.

FormerMember over 5 years ago in reply to FormerMember

Thank you so much for your reply and so much information. I had no idea about the declaration and will have to see if that is something my partner is willing to do.

The link to the online booklet is coming up as a bad request so i am guessing the link is wrong somehow. If you tell me the name I am sure I can find it myself