Hi, 

I'm sorry to read of the position you find yourself in. I think I am going down a similar route to your dad.

A diagnosis of cancer of unknown primary took 13 appointments, various departments and scans by which time I became in so much pain and bed bound. Eventually Ended n Gastro I was assigned a Macmillan nurse I pleaded for help with the pain and weakness and she spoke to our local hospice who have amazing facilities to help people like us. The aim is to get me back on my feet, our of pain, physio, support and to take me to my first oncology appointment at our local Cancer hospital next week to discuss future treatments. Without there help the hospital will not start treating me until I'm strong enough.

It all seems its happening round the wrong way but every case is different.

My main reason for replying is to tell you that although the hospital can help build your dad up and do a wonderful job, the people who have the true expertise in these times are the drs and staff at our local hospices. 

So here I am, staying in the hospice, day 3, drugs altered to suit me, sleeping and eating well and looking forward with fantastic support. The word hospice can be a scary one but if you are fortunate enough like me to have such facilities close by then please look into the prospect of your dad getting similar help to see him through to the first few days of treatment. It's good for him and for you as the family to be given an aim and be so well supported. My family have all relaxed a bit because they know how well I'm being treated, so that helps all round. Best wishes to you all. Xx

Hi,

So sorry to read about your Dad’s situation.

Reading your message, his case has been referred to a multi disciplinary team (MDT) which includes cancer specialists. This means that you already have a second opinion (probably far more). The oncologist doesn’t really need to see him (although as a cancer patient I know how reassuring a consultation can be) as a diagnosis is based on the results of tests and scans which are discussed in the mdt meeting by all the clinicians involved. This should have been explained to you but clinicians often wrongly assume this is common knowledge.

Sadly this isn’t a rare situation, often the very people who need surgery, chemo or radiotherapy the most are too ill to be treated as all three can be pretty gruelling. 

I hope they soon get to the bottom of this and your Dad is able to receive appropriate treatment. 

The lack of mental health support for cancer patients within the NHS is a national disgrace. 

Good luck

Dave

Dave I Have To Agree With You 100 precent onnthe mental health care,

I just spoke to my chemo nurse on this last Thursday and we have one  councillor between 2 major hospitals that is assigned to this,it's an Absolute joke,my my mental health is on the floor since diagnosed,but il be at least 2 years trying to get an Appointment for this help,proberly il be dead by then,they really need to step this up,treatment,as in chemo, radiology ect is bad enough to go through,but your just left to your own devices after that,it's not good enough,imknow personally I'm finding the mental health and emotions and fear much worse than the cancer itself,

Ange!

Thank you so much for your reply. I am sorry to hear about your news too but I am glad you are in a good place.

may I ask, for hospice care, do you mean when he starts treamtent such as chemotherapy etc or while he is building up strength for it? I will look into local hospices and do some research. Thanks for your help.

x

Ange, I am sorry you're going through this and mentally not getting any support. Have you tried contacting MacMillan Cancer Supprt? They are open 24/7 and I heard great things about them from my husband's mother who was battling cancer. Hope this helps. I hope you feel better soon.

x

Hi, I haven't had any treatment yet. Got my first oncology appointmrnt next Wed to discuss treatment. The Hospice Dr felt they wouldn't do chemo etc while I was so weak and suggested I went to the hospice as an in patient to build me up and get me pain free and mobile enough to have whatever treatment I'm offered. If you were assigned a Macmillan nurse then I would ask them if this is a route you could take before treatment. Otherwise ask the hospital if you can speak to anyone re hospices. Or just call and take their advice. It's not scary it's there to help and you need the help to get him to the next step. Please let me know how things go. Don't stop pushing. All the best Rose xx