Laughter and tears at the hospice.

Hear hear. I don’t visit my local hospice too often but I have regular contact with the home care nursing team. I don’t know what I’d do without them. 
xx

Dear daloni, may I ask what kind of services the home care nursing team provide, is this a service provided by the nhs or your local council. I get a phone call from my district nurse every 2 weeks to check up on my physical needs, fortunately I have been able provide myself with things in the house like a bath lift and grab bars for stability, so am still relatively independent, but that may change in the future. Thank you contributing to this part of the forum, I’m doing my best to try and revive interest in it as it had become quiet of late.

best wishes 

jane

Hi jane 

Like daloni I also have have the hospice home care team  my palliative care nurse looks after my pain management she also provides other help for me such as getting occupational health to come to my home to help with aids I need also help me in arrangements  for my EOL plan she showed me around my local hospice offered me to attend day activities at the hospice  put me on one response where if I had any problems with my health or personal  they are there 24 hours a day I've not used the service as I'm not 1 for talking .my district nurses was arranged by the chemo unit they come once a week but that could be because I have a picc line .I not sure I think it's the area you live in depends on services that are available  I'm sure Daloni hospice will offer different services to mine .

I'm in Essex 

Kym xx

Hi Jane 

I am not supposed to post here - but I get foxed by the site which doesn’t show which section it’s in at first sight. I have no more conventional treatment available but I’m on a clinical trial with the hope it will achieve something. It’s a bit of a no man’s land. 

The home care nursing team call me on a regular basis - more frequently now than it used to be - to check how I am doing and whether I have any needs. They have helped me out in a number of ways. They have worked with my GP on pain relief, making sure I get what I need. They have helped me and my daughters plan for the future and were really helpful in making my big girl feel safe to go to university. They also provide emotional support. I generally feel they have my back and that they know me well enough to pick up changes in my state and step in. I do think good healthcare requires good relationships and I think I have this with the home care nurses. Does that make sense? 

xx

Ps I think is right - the services depend very much on where you live. I’m in West Kent. 

Dear Kym, I’m so glad you are being well supported. I understand your preference not to talk, but it’s good to know that there is someone you can turn to if that changes. I rarely talk directly about my illness with people outside of the forum,  and at the hospice it hardly ever comes up as a subject, we’re too busy gossiping about things we have seen on tv etc !!  I am also supported by the palliative care doctor at my local hospital who acts as my advocate in medical matters, having blood cancer and kidney failure at the same time seems to be more than the nhs can cope with from a administrative point of view !! So he can step in and get the consultants to communicate better. Thank you so much for your contribution to this thread, it will be very helpful to anyone who is looking for information.

jane 

XXX

Dear daloni, you raise a very interesting point about being in no mans land. The nature of my illness means that any treatment I receive is essentially palliative in nature as there is no realistic possibility of long term survival, infact I’ve already outlived my prognosis. When my palliative treatment is no longer able to control my symptoms my need for more support will be quite rapid, so my involvement with the hospice was designed to put me on the radar. So I think the line between active treatment and palliative care is quite blurred and it’s possible to have a foot in both camps, most of the patients in my hospice group are on some kind of treatment or a trial and many have been attending the hospice for 2 years or more. The success of modern therapies has meant doctors can’t really predict timescales accurately anymore so we are all in a kind of limbo without the answers to questions we would really like answered. So I think it’s fine for you to post here, I think the main difference between the two groups is here you can talk more openly about things like disease progression and arrangements about end of life care. I am grateful for your support.

jane 

Thanks Jane . I think you’ve put that really well. Something has crystallised in my mind as a result of reading this. 

xx

As Christmas approaches, which can be a source of stress for patients with life limiting illnesses I just wanted to remind everyone of the wonderful support you can get from your local hospice if you think you might benefit from a helping hand. I’ve been having a lovely time making decorations to raise funds and enjoying the comradeship of my fellow travellers, so check out what your local hospice has to offer. 

Hi Jane

i go to my local hospice drop in and am really enjoying getting to know as you put it my ‘fellow travellers’. I also find helpful in my case the support of the hospice staff. We too are involved in art work for Christmas. I was a title unsure in the beginning as I felt I was being written off. However for me it is one of the best decisions I made , I am feeling much better emotionally and making friends . Take care x