How my hospice has improved my quality of life

Morning Johnty, My husband and I visited our local hospice for the first time recently and although it seemed like a huge step it was a very positive experience. I'm so glad you're finding it's having such a positive impact on your life. This will encourage me and probably some others to take the next step. 

Thank you for posting this, it does help. xx

Dear tinalay, thank you for your kind reply. I know that there is a lot of misunderstanding of what actually goes on in the hospice, so felt I should share my positive experience and it might encourage people who need support to consider being referred by their gp. Prior to attending the hospice I received home visits from my community Macmillan palliative care nurse and when I decided I was ready she arranged a guided tour of the hospice and that’s when I made the decision to start attending. I also see the palliative care doctor at my local hospital who acts as my advocate for anything medical and has proved to be a great asset.

best wishes

Hi Johnty

Wow, I haven't heard from you for yonks, good to hear from you now. 

I'm happy for you that the hospice has been helpful, before I was diagnosed I thought only people who were in their last days went there, it's refreshing to know that it's completely different to what I imagined. 

I sent an explanatory email to one in Belfast but I never heard back from them. Maybe I should chase it up again. Maybe they thought that I wasn't in need of assistance yet but then I would expect a reply. 

Tinalay, your hospice has made a good impression on you also, I hope it continues to be like that.

Speak later ladies

Tvman xx

Dear tvman, thank you for your kind reply. Generally speaking if you want to attend the hospice it is done by getting a referral from your general practitioner. My hospice offers all kinds of services both for physical problems and for emotional support. Some of the patients have been attending for a couple of years or more such is the unpredictability of the success of current treatments for different cancers. I am currently stable but obviously this can change at any point so the hospice is a safety net for me. I hope you are as well as you can be

best wishes 

Hi

How nice to hear from you - and to read that you’ve found such great support at your local hospice. Feeling respected and being heard are so important.  I get a sense of peace reading your post 

xx

Hi Jonty, The first thing my GP said to me after dx was I will refer you to the hospice! I was so shocked, I couldn't reply!

Next one of the palliative nurses visited me at home and I told her I wasn't ready to visit yet. I waited almost four months before having the courage to walk through those doors and found exactly the same as you! I wished then, I'd gone earlier! I attended day classes which were great and got to know other patients and most of the staff. I'm going to the Christmas Fayre at the end of December and a Christmas lunch in December! Anyone thinking about it..........just do it! You'll be glad you did! Take Care Jonty!

Dear daloni, thank you for your kind words, yes you are right I am at peace with my situation, since I decided to prioritise my quality of life along side any treatment that was available to me my life has become much easier and this is partly due to engaging with the hospice but also taking control over how my medical treatment is delivered, which can be somewhat disorganised as I’m sure you can testify to, spreading the good news about the hospice movement will hopefully benefit other people in my position.

best wishes

Dear Annette, I’m so glad your experiences mirror mine and you found comfort from attending your local hospice. I think it’s important to try and dispel the myths about what the hospice does and that’s why I started this thread, so thank you so much for your contribution, hopefully anyone reading these messages will be encouraged to consider being referred.

best wishes

 Hi Johnny thanks for your post.I had my oncology appointment on Monday.The nurses told me about a clinic I can go to,but also gave me a leaflet I think for a hospice.

My daughter was with me so I just said thank you although she said it’s for Further down the line.I think your right I definitely think the world hospice Frightens you.I know I will face these decisions but your post has helped .

Dear Peggy, thank you for your reply. Deciding whether you want to attend the hospice is such a personal decision and not arrived at overnight. I am 16 months on from diagnosis for a blood cancer which has a very poor prognosis so for me the clock is ticking quite loudly and I felt the time was right to reach out for support not just for me but also for my husband who has been my sole carer, less stress for me is less stress for him !

best wishes