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Carers only

Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.


Posted by

My husband has just been diagnosed with non small cell lung cancer! I am a qualified nurse with many specialities but not palliative care! I have recently got a new job, found out on my first day only 4 weeks ago and I couldn’t be at the appointment! Waiting to see an oncologist but the administration team being awkward and won’t give us an appointment that I can attend! I am overwhelmed and have quite a few questions! I just wanted to go to that appointment but it doesn’t look hopeful as I need a weeks notice and they won’t give me that at the hospital! I understand my husband is not the only one but I trained in the days where carers were important too and it does not seem that way now! I am so upset I can not go to what I see as the most important appointment! Has any one else had this? My employer is helping as much as poss but we only have 2 staff running really busy clinics at the moment! 

Posted by

Hi Akela2516,

sorry to hear about your husband’s diagnosis.
I’m guessing from the name you might be a cub leader as well as a nurse (mwife is also). I am a bit confused - is it your oncologist who can’t give you a week’s notice? If so that’s pretty shocking, they know from experience how important it is that there is enough time to arrange getting to the appointment with people to support the patient. As your husband has just been diagnosed you are likely to be spending quite a lot of time there, so my advice is to basically don’t take any crap from them! If there aren’t helping then Huey are adding unnecessary stress to an already awful situation. It seems very unreasonable to not work with you so you can attend these appointments. The first question is have you been assigned a CNS - cancer nurse specialist - or a Macmillan nurse? If so, ring them and tell them the situation. We’ve always found they are outstanding at cutting through the hospital crap. If that doiesn’t get you anywhere then get PALS involved.

They should be working to help you not make things more difficult. 
All the best


Posted by

Thank you Chris! I was an Alexa but not now! I can not believe that the hospital are making it so difficult! Apparently it is the patient that counts, which I agree with to a certain extent! But in my experience of over 35 yrs so are the carers! This is my main stress! I can cope with the rest but need my questions answering which are different from my husbands! I spoke to the main Macmillan helpline yesterday and have been given a local number which I will ring! The only member of staff who has shown any compassion was the lung cancer nurse! I am thankful that my best friend works in palliative care, not in this county but she will help me! I rang Pals and they can not answer any calls for 4 days as they are ‘busy’ so that will be too late! I have to work, I will need my job as I have my own mortgage, this is my second husband! My first also died! My husband is not insured! It is a new job and we have sickness and are short staffed so need a week to make arrangements for appointments! I guess I will not get my questions answered but hope the Macmillan nurse will help me with that! X

Posted by

Hi Akela, sorry you are having problems. Just wanted to say our Macmillan Nurse has been brilliant. They seem to be able to get things done when others appear to be creating problems so just keep ringing your Nurse. if they are anything like ours they will sort appointments for you. Good luck

Sue x