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Hospice Care Week -a patient’s experience of starting a new life

3rd October 2016

max-steele-day-hospice-painting-forget-me-nots-crop

 

My story began back in November 2015. Well actually even further back than that, 2005. Everything started when I was diagnosed with Heart Failure and Dilated Cardiomyopathy (DCM).

After suffering from a cough that would not go away and the constant nagging of my wife Catherine, I decided to get myself check out properly. Imagine the horror we got when we were told that I had Heart Failure.

Over the years and constant medical checks my condition gradually got worse. Ending up with me regularly being admitted into hospital. Each time I seemed to bounce back and things seemed to get sort of back to normality. But my heart was getting weaker and I was convinced that I was now not going to recover fully. But I was still up beat. Then one day the cardiologist came to see me on his rounds and asked me to sit down. I did what I was told. Feeling quite cheerful, as I knew I was going home soon, I wondered what news he had for me.

Then the bombshell was let loose. “Unfortunately Max there’s nothing more we can do for you medically and we are going to refer you to the local hospice, St Richard’s”. My little world collapsed in an instant. I went into an immediate panic and had a huge anxiety attack. What do I do, what does it mean, who, what, why! I couldn’t take it all in and I had lost control of my life.

Apparently my heart had almost had it. Severe AF as well didn’t help so I was now in a complete melt-down. I was also told that I would be referred to the heart transplant team in Birmingham as well.  Eventually I left hospital and was at home wondering what would happen next. That’s it I thought. They’re sending me to the hospice to die.

I soon received a letter inviting me to an out-patient appointment at St Richard’s Heart Failure Clinic. I learnt that it was an out-patients appointment with a difference. There was lunch first for both me and my wife. We turned up as two emotional wrecks. Both of us were scared. Me more so than ever and I didn’t have control of my life.

We went in to meet the cardiologist. There was no clock watching, we were sat in nice comfy chairs and there was no desk in-between us. It was a totally different environment. There was a definite feeling of “they actually care about me”.

 

dark-pink-hospice-care-week-2016-stamp-for-use-online-2 Then we had a meeting with the lead Palliative Care Doctor. I had never had a meeting with a doctor like it before in my life. Well, my journey had just started. We had discovered just what the hospice was all about and it was not somewhere where you’re set to die. It was the complete opposite. I would be going to Day Hospice on Wednesdays for initially 12 weeks.  One thing I learned very quickly was that my old life had gone. I was now someone who had a life-limiting Illness and I had to learn to re-build my life almost from scratch again. Initially I believe I was that in the process of mourning the life I had lost.

Day Hospice started for me in April. I was picked up from home by a volunteer driver and welcomed at the hospice by the medical team. I very quickly felt as if a warm cuddly blanket had been wrapped around me and I was being helped by many people in rebuilding my life. My first day was all a bit of a blur! There was so much going on. But I did meet an awful lot of people. Other patients, volunteers, medical staff, doctors, everyone was looking out for everyone. What a wonderful way for people to rebuild their lives after a severe traumatic event.

Another thing I found out quite quickly was the support from others in a similar situation. I thought here is a place where it was very quickly becoming evident from all the activity, where a statement of  “here, we all cry together and, we all laugh together” was a brilliant way to tell our story.

Talking is a wonderful way to help heal and conversation with others is a wonderful way to get your troubles, worries and anxieties out of your system. Everyone has different needs and respect is high on the list. Not everyone wants to discuss their problems and that is respected by everyone.

As time went on I found that I had built up some good friendships with other people. People I had never known before. But like me, they found themselves here in the same situation.

St Richard’s, has over time developed a marvellous system and programme of activities that benefitted everyone. I even found talents I never knew I had. Sketching and painting are absolutely fabulous. Something I am now very keen on and will continue to do for as long as I can.

Max Steele DH patient and Clare Griffiths with prayer square As I had a severe heart problem a chance that there might be a way out happened. The transplant. I had just resolved myself o the fact that I wasn’t going to get any magic bullet come over the hill, when I suddenly got an invitation to go for an outpatient appointment at the heart transplant centre in the QE hospital, Birmingham. Catherine and I went along thinking that a chance might actually exist and I was on a reasonable high. Nope, it didn’t work well and the day after I was back at the Day Hospice feeling very, depressed. I just walked through the door, and the nurses noticed something was up from my expression and I got wheeled directly into the doctor’s office.

The hospice team then helped me build myself confidence back up once again. A few weeks later an appointment to go in to the hospital in Birmingham for a week of extensive tests and a ‘Final Assessment’ was received. Talk about a roller coaster. My head was such a mess with changes in chances. Well eventually everything was a final no. No chance, too much of a risk. So here I was again back at the bottom of the pile mentally in my head. By this time I was attending the Day Hospice on both Wednesdays and Fridays.

Well the team at the Day Hospice worked their wonders again and with all the support from a host of others I have pulled through all of this. I will finally be discharged from Day Hospice in mid November and feel that I will be able to cope much better. Medically my condition will never change and my prognosis is from 1 to 3 years. But in my head I think I have accepted my fate, and you know what. I’m no longer frightened about it. I believe and with the help also received from members of the marvellous chaplains department, I have faced my fate and fears. I can now talk openly about it all without breaking down. Yes men do cry! I cried a lot and I don’t mind admitting it.

I think I can cope, well for the moment anyway. Mind you I had help in so many different ways. Even down to advice on how to get a stair lift installed, the best way to get a mobility scooter. The list goes on and on. I cannot thank the staff, volunteers and other patients enough. Day Hospice has changed me forever and I now know what the word “hospice” really means. It’s a place you come to, to learn how to live again. I think one of the best ways to describe your life when something like this happens to you is – life is like a glass vase that can shatter into a  thousand pieces when dropped. You cannot put it all back together again. However, Day Hospice helps you put your life back together and rebuild that vase into a new and better suited shape.

Thank you Day Hospice you saved my life.

Max Steele