I’ve had two experiences of Dorothy House. My first was three and half years ago – and the feeling my husband, Derek, and I had at the time was that Dorothy House was like a blanket around us. The initial contact was wonderful – they had time to spend with us.
After treatment, we had some wonderful family time and I was off the Dorothy House books, so to speak. Then last October I was told I had only months left. I refused chemotherapy and Dorothy House stepped in. I just felt totally taken care of by professional, competent, experienced people. I felt I’d taken a bold decision rejecting chemo - but they were there.
I was introduced to Dorothy House Nurse Specialist Wendy, and that support was lovely. Wendy saw me through to Christmas and stepped back a bit as I felt so well – and I was fine until April. One week I was doing aerobics, the next week I couldn’t.
Then Wendy started talking about bringing a bed downstairs, the just-in-case medicines and a commode in my room, and all the time I was thinking: ‘It’s too soon and I’m not ready for this.’ But both Derek and I felt it was admirably handled.
It’s true, for the first week the bed was here I didn’t like it much, but it’s given us time to adjust and get used to the notion that I’m reaching the end of my life, and I’m likely to die in this room.
I feel Dorothy House took professional decisions based on their experience, carefully, with us, they didn’t override us but they said it’s a good idea to get it in place now. So, I totally value their professional judgement and experience at knowing when to step in, and Derek appreciates that, too.
I really value the great communication that goes on in Dorothy House – not only does every member of the team have access to my notes, but they read them!
There is something wonderful about phoning Dorothy House – they know all about you – you don’t have to go all through everything again.
Not only does the contact work well but when we called the Clinical Communication Centre with a query about my meds, we got a follow-up call the next day saying: ‘Was that all right for you and do you need anything else?’
For me, the pinnacle of the support is Wendy, our Nurse Specialist - she has the right balance between facing the reality and being reassuring. When I felt so bad in April I asked her if I was getting close to the end or if it was a blip – she was thoughtful and honest and reassuring. She sees me regularly and I always picture her support like a handhold.
I also love the fact she’s taking care of Derek. This situation is hardest on him. She always asks after him and talks to him directly. We’re not just a couple, we are two people and I’m not the one facing grief. He is. And I know Dorothy House is there for him.