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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.

What now! Awake and worrying

Akela2516
Posted by

Well husband decided to go on a 5 day drinking binge as his first treatment was due! Over 4 litres of whisky later and no chemo/immunotherapy!!!! I went to the hospital and explained what had happened!! His ptsd has flared up! I wonder why??? I did try and tell the consultant at the this is what you will do meeting but she didn’t intend!!! Promised a phone call yesterday!! Not had one!! He Tod the Macmillan social worker all is fine despite me saying differently! Now I am back to work today! Yesterday was my only day off! And no idea what is next!!!! Oh well I guess I am alone with a dying man then!!! It feels like a huge burden!

LoobyLou49
Posted by

Hi  

sorry to hear what you’re going through. Someone said to me, ‘you can take a horse to water but you can’t make it drink’ and it helped me a lot. I took a step back emotionally and I’ve been managing better since then. It can’t be easy for you but it’s not your responsibility to get your husband to have treatment. Have you spoken to your husband’s specialist nurse for advice?

Hugs,

LoobyLou   

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

Akela2516
Posted by

The specialist nurse is useless! They will not speak to anyone other than the patient!!! Do not return calls and are generally the oncology unit had been utterly rubbish!!! We are supposed to be seeing his consultant again in 4 days time!!! Lack of notice again!!! It is more the hospital than my husband who is actually distressing me!!! 
I will not be singing their praises until they get their act together! The “care” is appalling! I was promised a phone call two days in a row! Day 3 and I still have not had one!!! 

Cyprusfan
Posted by

Hi sorry you are going through  this..  It's certainly frustrating when they will only talk to the patient.  We have same issues with our son (the patient) and our daughter (donor).   

Anything we ask they will not tell us.  We are just as much a part of all this as the patient. 

Will your husband attend the next appointment. 

Hayley x

The BODACH
Posted by

I'm sorry to read that the hospital staff are less than helpful to you and that you have issues with various members of staff not returning phone calls.

Not defending the specialist nurse in anyway but it could be that she is invoking a confidentiality rule by not discussing your husbands treatment with anyone apart from him, what you need to do is get your husband to sign a note stating that he gives permission for the staff to discuss his treatment with you and that should solve the problem.

Any other issues you are experiencing regarding lack of notice and return of phone calls you should keep a diary of events then contact the hospitals PALS office and ask for all your points to be answered. The NHS has set guidelines on how your complaint should be answered and a time scale for keeping you informed throughout the investigation, if you are not satisfied with the outcome you have the right to take it further and PALS should give you details on how to do this and who and where to address your further concerns.

I hope the meeting goes well in three days, this is your chance to ask the consultant questions and to this end you should go to the appointment armed with a list of questions you want answered, remember if the consultant goes too fast or you don't understand anything just stop him at anytime and ask him to repeat it slowly in words you can understand, you should also write down the answers given to your questions so that you can refer to them when you get home, you should take a few pens with you and a notepad to jot down the answers. It won't do any harm to mention about the specialist nurse not discussing your husbands treatment with you and give him a copy of the disclosure letter.

Regards 

Ian

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community ● 

Living with incurable cancer - incurable patients only / End of Life

Call Macmillan Support Team 0808 808 0000 every day 8am to 8pm

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Akela2516
Posted by

I have no issue with understanding! I am a qualified nurse of 35 years! What I do not appreciate is being spoken to as an idiot and being condemned for asking questions! My husbands diagnosis has been missed in the first instance and then dramatically changed! I feel they are covering up!!! An honest apology would surfice!

my husband has asked them to discuss things with me but to no avail!!! Pals have not been helpful!!! we have asked on most occasions to give more notice for appointments but to no avail!!  I am afraid no matter what you say to defend them, they have been pretty hopeless! Thankfully his GP and the hospice which I have self sourced have been very helpful!!! At some stage I may well be taking it through a legal path!!! 

Akela2516
Posted by

Yes he will! I am trying to arrange time off but as I am a nurse running clinics myself it is really difficult to arrange last minute appointments! I can not let patients down. 
I have heard a number of complaints recently and similar experiences x

Cyprusfan
Posted by

Hi Anelka

Are you able to take a period of sickness leave from work.  I know with our son his appointments are.short notice and can vary in times also.  It would  alleviate your stress somewhat if you could get cover for your post.

Hayley

The BODACH
Posted by

Hi again

I'm sorry if you read into my post that I was defending anyone, which was not the case, my intention only was to highlight a few probable reasons for the lack of communication, but with your long standing knowledge of the NHS system you already know the brick walls that can be built.

I do hope that you find a solution to all of this that is mutually satisfactory to all concerned.

If you would like to talk to someone our dedicated telephone support team is available every day of the week between 8 am and 8 pm on 0808 808 0000 and they may be able to advise on a path to follow.

Again it was not my intention to defend anyone and if I gave that impression I apologise wholeheartedly.

Ian

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community ● 

Living with incurable cancer - incurable patients only / End of Life

Call Macmillan Support Team 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

The BODACH is LIVING WITH A ST● MA

Akela2516
Posted by

No I have only been there 7 weeks! I am also finding work a bit of relief! They are very supportive. I have juggled work again for the next consultant appointment and my husband will write a letter of authorisation for me! We are going to be up front and tell her we want an answer for the change of diagnosis and if there isn’t one it will be a PALs complaint! 
anyone can make a mistake, that is fine but an apology and an admission of error is needed here! 
She can also stop this text book leaning towards us and invading our space with a soppy voice! Not appreciated! 
we are seeing the hospice team on Tuesday which I know will be helpful! 
thank you x

Cyprusfan
Posted by

I take your point about work it can be a relief.  I am missing mine like mad .

Hope you get the answers 

Hayley x