Patient Stories

Ray Mace, living with heart failure and Parkinson’s

When I was told the news, I was particularly miserable and fed up and when somebody suggested coming to  St Richard’s I thought, how long have I got then? People saw it as a one-way door in and no one going out. I was going into decline, staying at home, finding it difficult even to watch the television anymore.

When kind people came round to see me they asked questions about my illness all the time – how long have they given you? Will you go bald? Coming here was an escape from that. I liken the hospice to a rest place for weary travellers.

There’s none of us exempt from dying, we know we’ve all got to face it in some way, and what the hospice has given me, is the strength to realise it’s still worthwhile trying to enjoy life. St Richard’s has also given me time to think, what do I want out of life, what do I want to do and can I do it? One key thing I have gained from St Richard’s is the realisation that life doesn’t end tomorrow.
Coming to here, talking to people, realising that you’re not alone and that people know what you’re talking about – if St Richard’s can take that to the thousands that are going to need help, it will work even more wonders.

Jackie Pickford, living with Multiple Systems Atrophy (MSA)

Jackie attends a regular hospice outpatient clinic, tai chi sessions, and has complementary therapy to help for condition. She has also had a short stay in the St Richard’s In-patient Unit to improve her symptoms.

Jackie explained, “When I’m at St Richard’s I’m treated as a human being, not as someone being processed. I find the tai chi very relaxing and it improves my movement. It’s easy to do and gives me the skills to help manage my own condition. In our group we have people with different conditions, capabilities and needs, sharing a common enjoyment of doing something physical we probably wouldn’t be doing otherwise.

“My reflexology sessions were relaxing and I now have aromatherapy massages to help relieve pain. For me it’s also about the camaraderie, and knowing you are not on your own. It’s a place where it’s normal to have issues but you don’t have to talk about them or feel the need to do so. It’s fun and light-hearted as well as being extremely useful as staff talk to each other so my care is co-ordinated.”

Jackie’s husband, Ian added, “When we told some of our friends that Jackie was having hospice support a number of them said, ‘I didn’t know Jackie was that ill.’ They thought hospices are places to go when nothing else can be done, but that’s not the case. Hospice care for us is about life improvement, not life end. It’s having fun, staying fit, learning skills to help self-manage your condition and enjoying life.”

Terry, living with advanced prostate cancer

On the sixth of January 2014 I was diagnosed with advanced prostate cancer and my life changed in a split second. Everything that I had known and taken for granted suddenly became very vulnerable with life even more so. Oncology sprang into action and the circus of tests, examinations and biopsies had begun. I found myself caught up in a whirlwind with nowhere to run to for safety and security, nowhere to take a breath.

Early on in my illness I was introduced to St Richard’s Hospice via my GP. Conscious of a reaction to the word ‘hospice’, he was quick to point out that it was only a word and far removed from the stereotypical definitions that my parent’s generation may have had of it. As he so rightly pointed out, it was for living the life you have to the fullest and in the best possible manner. I liked the sound of this!

Reassured, I took up his offer and shortly after, I met my specialist nurse, Julie. She helped me to unravel the complexities of my illness, the processes which I was now being affected by and above all, someone with whom I could share my most intimate fears and thoughts with but still feel good about it. It was she who introduced Men’s Space Club to me, outlining what the club was for and some of the many activities the club members were provided with.

I now belong to a group of like-minded men who offer me companionship, laughter and encouragement, who pick me up when I’m feeling low and offer me a sounding-board when things are tough. More importantly, the guys offer me the opportunity to share my innermost feelings in a safe and secure environment. Whether its tears or fears, they’re there to offer support. I have somewhere to go where I can sound off, priceless!

The most valuable gift that the club gives me is the opportunity to discuss my illness, any aches or pains that may be bothering me or forthcoming procedures. To be able to listen to someone who’s been there and are happy to share their experiences has been and still is, a most powerful tool in my armoury.

With our new, expanded building we’ll be able to support people from the point they are diagnosed, improving their quality of life and offering support to their family.