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“At the Hospice, for the first time it feels like everybody’s on my side.”

20 April 2021

Family man, Adnan Saeed “Sid”, was referred to the Hospice in August 2020.  It was quite a shock at first, but since then he’s got to know Birmingham St Mary’s through staying on the inpatient unit, seeing the community team, the family and carer support team and via his weekly sessions at virtual Day Hospice.

During the pandemic, the Hospice felt like the safest place for him to be, not just from Covid, but from the whole world. Here, Sid tells us about his life journey, his family, his philosophy and how Birmingham St Mary’s has helped him find peace.

I was a train driver for 30 odd years and for about four or five years I went off the rails in my personal life. I started gambling. It became compulsive and took over my life. I tried Gamblers Anonymous, I tried various things. Then I ended up winning a life-changing amount of money. I thought, at last, I could lavish money on my family and go on holidays, but within five days I’d blown the lot. Having to tell the wife was hard. It was OK but obviously she didn’t take it very well.

I got a place at a rehab centre in Kent. It was a 14 week programme, no contact with the outside world. While I was there I got ill with what I thought was just a chest infection, so I saw the local GP, who told me I had fluid on my lungs and sent me straight to hospital. They wanted to keep me in but I persuaded them to let me go back to the centre. The rehab manager suggested I go back home and finish the programme when I was better.  I said I’d sooner leave in a body bag. I’d always taken the easy option and this time I was determined to see it through.

After I got divorced I said I never wanted to get married again but when Dominique came to pick me up from rehab with our five children, I proposed to her right there.

We got married the day after I came out of hospital, after doctor told me: you’ve got genetic heart disease, you’ll last five to six months max. I’m coming up to five years now.

Facing the reality of my situation

I was referred to the Hospice in August 2020. Before that I’d been to the Queen Elizabeth Hospital to have the fluid removed from my lungs and my kidneys seen to. Then randomly I got seen by a palliative consultant. I thought nothing of it, but then an appointment arrived for Birmingham St Mary’s Hospice. I went with my wife and we sat in a small reception in front of a board with loads of in memory messages on it. Then it really hit us both.  I thought the hospice is only there for one reason and for one reason only. But it’s the exact opposite of what I thought it would be.

The nurse told me; you’ve been referred to the hospice because you’ve got multiple organ failure and you’re in palliative care. It was like Birmingham St Mary’s had grabbed the bull by the horns.

Finding a sense of clarity and peace

I believe in fate. I was born a Muslim but I lost my faith. However I was told by a Christian friend of mine that it doesn’t matter who you believe in, if you ask the Almighty for help from your heart, it’s never too late. It’s what I did.  And I had this moment when everything became clear.

At the Hospice, for the first time it feels like everybody’s on my side. The doctors, like Dr Lu or Dr Ally, they will sit down next to me and talk to me. Even though they’re busy, they’ll always find time to stop. And they always ask me what I think about my care. They run every single thing past me. It really warms my heart.

Support for all the family

This is a big statement to make but I’m the happiest I’ve been in my life. I’m at peace with my children. They’re having counselling from Sally at the Hospice and Dominique and I have spoken to Maxine, our Hospice social worker, numerous times.

I attend the virtual Day Hospice and I say to my kids who are always using my gadgets at home, Thursday morning, just make sure my iPad is charged 100%. Whilst my wife is home-schooling, I say you’re the headmistress, I don’t want to be interrupted for three hours. I enjoy it so much, I really do.

I was on the Hospice ward for 23 days. Before I arrived, I’d pictured something completely different to what I got. Everyone, no matter who I met, was just so nice. I just felt so safe. Safe from everything in the world but also from Covid.

I eat Halal but I’m happy to eat vegetarian food. On one of the first days I was at the Hospice, the catering manager came to talk to me and said she could order some halal meat for me. I said, no you don’t have to do that. She said, we want to! I like English meals, so they’ve made me halal shepherd’s pie. At hospital I didn’t always want the food but here, I’m hungry every day!

The toughest part of my situation is not knowing how long I’ve got. I’ve got two grown up kids by my first marriage and five with my second wife. My older kids know everything that’s going on. But the younger ones, I’m not sure, I think they understand. Mum’s told them, that dad gets upset. When I’m not there, they come into my room and say good morning and kiss my pillow. They ask me, when are you going to get better? And it’s hard to say: I’ll get better soon.

After getting over the big issues with my gambling, I just wanted a normal life and then this happens and you do think, life’s not fair. I’m not angry at anyone though. I believe when you’re born, it’s written how long you’ve got. If it’s taken me to have this illness to become the person that I am, then I accept it with open arms. Otherwise I don’t know how I would have ended up.

My wife is 19 years younger than me. I met her at a time when I was at my worst. It’s mad, I didn’t think she’d give me a second look. But even now, without blinking an eyelid, she never complains, looking after five children and having to come in to the Hospice. Without me even finishing my sentence, she knows just what I mean.

She wanted to get married, she wanted that white wedding and I could give her that. But obviously I can’t give her that ‘happily ever after’. But I know that she and my children will get support from the Hospice, and from my family and my friends. I’ve got no worries about that.

I accept it but when I fall ill and I start thinking – is this my time? Then it does frighten me, because nobody wants to die.

I’ve got my religious side but I’ve also become very spiritual. I feel reborn, honestly I really do. In the Day Hospice they do a relaxation session at the end. You’d be amazed that if even if you’ve had a bad day, if you totally relax yourself, you can get that bad day out of you.

Giving something back

I’m really proud of my wife and kids’ fundraising. They signed up the family for the 40 Mile March.  That’s 280 miles between us ,which was quite daunting. But they’ve smashed it! They really enjoyed it and collected about £1,500. I know the Hospice is a charity so if there’s anything me or my family can do to help, we’ll do it.

I’m so thankful to everyone at Birmingham St Mary’s: the doctors, nurses, occupational therapists, catering staff, cleaners, the day hospice team, the communications team, and counsellors. And that’s naming just a few!

Thank you Sid for sharing your story with us. If you would like to help support more families like Sid’s, please take a look here.