Visting the hospice for the first time today

My GP referred me to the local hospice soon after diagnosis.   His attitude was it was better to register early so that help is available when needed.       I had an appointment to chat to a member of staff who just really explained their set up.    They agreed I didn't need help at that moment but gave me a card to contact them when I felt I needed to.

The only upsetting thing was when a family were leaving in tears with a suitcase !   I must say I found that a bit daunting, although the staff were being very kind to them all.

Hope it goes well for you and gives you some comfort.

Hi

When I spoke to my GP after my initial treatment, we had a discussion regarding hospice. I was absolutely horrified and truly balked at the idea.  I was so glad I took his advice though.  It was an eye opener.  I’d expected something totally different to the experience I got.  I was shown around the whole set up and loved the place.  I’d always thought I’d want to be in my own home at the end but I quickly changed my mind after my visit.  The staff on every level were lovely.  I signed up for a few different things like pottery and even booked a massage.  They explained a lot of things to me about how things are done and came away feeling a lot more positive than I had beforehand.

Hope you have as good an experience as I did.

take care.x

Hi

It can feel like a big step making that first visit to the hospice. I’d agree with what others have said. I was referred almost immediately after getting the incurable label - at my request. My mum died in a hospice so I already knew something about them. I’d also visited several and written about the hospice movement as a journalist. 

In my experience, hospices are all about trying to help people to  live as normal a life as possible as well as helping us to have a good death when the time comes. 

My hospice has helped me in some very specific ways. The counselling I received at the hospice was far and away the best counselling I’ve had. The nurses have been able to liaise with my GP on my behalf to speed up prescriptions. I have a regular telephone call with the home nursing team so I really feel I know them, they know me and I’m confident they are ready to step in at a moment’s notice. It’s a great safety net. I’ve had some nice things too like free massages, a mindfulness meditation course and family days where we do arts and crafts. 

I hope your experience is as good as mine  

xx

Hi

I think you're really brave - it's a hard thing to do, my first experience of the hospice was very difficult. We're all different so I won't cloud your thoughts with mine, but it is your choice how you engage. I've stepped away for the time being but I'm glad they're there and will seek them out when I feel I need it not just because of my incurable label. It's good to know your options... 

I'll be thinking of you today. 

Hope you have something lovely planned for tomorrow! 

x

Hi Gina

I have yet to go to the hospice, I'm not ready for that yet. 

However, I have been to see a counsellor, arranged through Cancer Focus here is Northern Ireland, I was put forward by my wife.

I went approximately 15 - 20 times. I was feeling like my world was caving in because there I was, 5 years or so from retirement and my dreams of moving to Spain or touring Europe were being slammed against the rocks. 

My case was different than others, I had been diagnosed with a bone marrow cancer (MDS), and I was experiencing sciatic nerve pain and lower back pain and as my job involved a lot of walking and lifting, I had a lotta pain. In the end, just 3 months after the cancer diagnosis, I was diagnosed with spinal stenosis. Eventually, I had to stop working (and walking), and travel by means of a wheelchair. That's why I said I was a little different. 

There were times when I was so emotional that most of the session was tearful which was so humiliating and embarrassing. I think my wife went once, maybe twice, which made me feel even more humiliated and embarrassed.  

My counsellor had a PhD in counselling, so clearly well qualified. I was content with using the phrase "low/high mood", it was frequently on my lips. I'd say I benefitted from the sessions, I'm now used to the situation so I'm not attending although if I do need to speak to a counsellor,  I just need to lift the phone. 

Gina, I hope you find solace with the sessions, you can at least get a foot in the door which is necessary to release any stress or tension, in my opinion it is well worth it.

Tvman xx

Thank you all for sharing your experiences and advice. 

It was good. I did get emotional when I got there so and it was pouring. So I didn't get  shown around. I met the counsellor and had a talk with her and either that or my occupational therapist the day before gave me a kick up the arse to get out and do things. I was sort of hiding at home the week before having a quiet pity party. This week I have managed to get out doing things on the basis if I want to go back to work, I need to have the energy to do it.

So it was a good thing to meet them. We did discuss services but for now I felt the one I needed was the counsellor. More so when it's scan time or results of scans as this is the time I feel I don't want to speak about things to people I know, or when things worry me the most. So I will contact as and when I feel it would benefit. I will also see the palliative care consultant again in about 3 weeks.

I have always been told no massages (meanies) maybe that may be lifted now. This is something my local Macmillan offers so I would probably go there though, as it's much easier for me to get to as I can walk easily there. The hospice is a few miles away up a massive hill. They are doing a trial run bus route to it, however they are only every couple of hours.

Thank you for all your encouragement again.

Hi gina

so pleased to hear the visit went well.  You obviously got what you needed from it.  A shame you didn’t get a proper look round because of the weather. Typical!

ah the massage.  You have to be careful when you have one with cancer and treatment. They have qualified cancer patient masseurs for the likes of us.  I found them relaxing but nothing like as good as when I was well.

enjoy.x

Hi

It sounds like you had a good visit - I can understand why you felt emotional though. 

I’ve just had a massage this afternoon. Very gentle but very good. 

Xx

I’m so glad to hear that your visit to the hospice was positive. I am a counsellor and administrator at a hospice (and now a patient). Before I worked there I guess I just thought that it was a place to die. It is so much more. As well as Having access to specialist palliative medical support, there are day activities such as creative workshops, exercise sessions, cafe planning advice counselling and all sorts of holistic therapies from massage to pedicure. Those who use these day services seem to really enjoy them.