Feeling helpless

Hi, I am very new to this forum as my dad has just been diagnosed in the past 48 hours. So I don't know if I can offer any advice but I wondered whether your hospital has any kind of patient liason service? There have been a few times over the past few weeks where i have been worried about my dad's care / diagnosis and I have written an email to the consultant looking after him. It hasn't been a complaint email, but more of a can you explain to me so I can understand email. But I have sent it via PALS (patient liason service) and this means they see it as well. On both occasions this seems to have got things moving and improved things with my dad. I even had a call from a lady I  clinic governance who was then able to find out everything I needed to know about my dad's care and make sure things that needed to be in place, we're in place!  It might be worth a try xx

Hannah, my God how I feel for you and your aunt. It takes me back to when my mum was dying many years ago, lack of staff and knowledge then, but there is no excuse for it now.

If it was me I would rant and rave to get something done, speak to whoever is in charge.

I have an incurable cancer, but I am lucky, my 'team' at the hospital look after me well.

Speak to someone at the Macmillan team, they should be able to offer advice on your aunt's treatment,  but in the meantime,  she will certainly benefit from you being there for her showing her the love you feel.

I wish I could help more, I really do.

My love to you and your aunt, bless you both.xx

Hannah, I posted my reply in the wrong place, it is on Sheepy697's post, so sorry

Thankyou Sheepy, I am sorry to hear about your Dads diagnosis and I hope you are both getting lots of support. We do have a PALs email at the hospital and as of today I have never received a reply from the many I have sent. It’s so incredibly frustrating. I will persevere, Thankyou for the support and advice 

Thankyou so much for the boost and kind words. I am so happy that you have a wonderful team surrounding you and I hope you continue to get the support you so very much deserve.

Today she is having a good day, which I am so incredibly great full for. 
Someone from the oncologist team visits her every morning, I managed to catch them yesterday, I asked if there was a more suitable ward, they told me that they have limited beds and there are none available, they then told me that as she is not on a surgical ward there is no where else for her to go. As a family we have now set up a rota where one of us is there from 9am - 7.30pm. We have also started keeping a log of what is happening. I’m hoping that we can get her pain free enough that we can get her to a local care home (all of our local hospices are full). She so badly wants to see out of a window.

thank you again 

Hannah

Hannah,  so glad things are slightly better, it is lovely that your aunt has constant support and love from you and your family.

From my position, it is so uplifting, a warm feeling like a blanket around you,  to know I have family and friends who love me and support me, so as long as your aunt knows you are there,  she will feel it too.

I wish you and your family and especially your aunt, lots of love. Bless you all.xx

Forgot to say, I hope so much that she gets  a window xxx

Hi Sheepy, so sorry to hear of your dad's diagnosis, but it seems that you are chasing up the best care for him.

I don't know what the full diagnosis was, so cannot comment on that, but, whatever it is, your dad will be in shock I suspect and will need your love and support  but also understanding of what he is going through.

I have multiple Myeloma and have met many sufferers who all tell me the same thing. It is not a dead end, the timescale is indeterminate,  lots and lots of time left, dome of the group laughed at a comment about being given 5 years to live, when asked when he was told this, HD said 16 years ago and due is still healthy.

Anyway, look forward, be positive and make sure your dad knows how much he is loved.

Love and best wishes.xx