"I wasn’t going to sit there feeling sorry for myself"
Steve Hoggarth received more than 1,600 birthday cards from people across the world for his 47th birthday in February 2017. Steve was diagnosed with motor neurone disease (MND) in March 2016 and set out to raise money for St Helena and the MND Association, well surpassing his target.
Steve and his wife Cheryl shared their story ahead of his second respite stay at the Inpatient Unit. Steve died three months later. You can watch their short film or read the transcript here:
In December 2015 I noticed a twitch in my left arm so I went to the doctor just after Christmas and had some blood tests and found out I was diabetic. We got my blood sugar level down to where it should be but I was still having the twitching. I was sent to the neurological department at the beginning of February and we were told various things it could be - with MND being the worst scenario - so I had more tests over the month.
We went to see the consultant on 4th March, a Friday, and he gave us the news; I had motor neurone disease. That weekend did us in, but at the end of the weekend we had come through it. My work said take as much time off as I need but I thought, ‘I’m not going to get better so I don’t want to waste the days that I’ve got just sitting here moping when I could still be out there working’. I went back to work on the Tuesday because I wasn’t going to sit there feeling sorry for myself. That’s not the way I do it.
I wasn’t going to sit there feeling sorry for myself. That’s not the way I do it.
Considering a year ago I was training to become a referee and was quite active with work and sport, the last year has gone really quick because I can’t move anything now. I can shake my head and I can talk which is a good thing.
The first people we told after we found out were Jason and Danielle [Steve’s children], they know what’s wrong, they can see me deteriorate, they know what’s going to happen in the end. We were honest with them right from the beginning. All the decisions we’ve made, we’ve informed the kids so when it comes to the time when I am going to die, when the machine needs to be switched off, or anything like that, they know that we have already talked about it. We have all been really open right from the beginning and if we are in our bubble where we are all OK, then we’re all OK. If one of us gets upset, then normally it goes through the house and we all get a little bit upset. It’s all about us four.
We don’t know how long we’ve got. It could be a chest infection next week and I’m out of it forever, it could be like Stephen Hawking around for 60-70 years, you never know. 60 years might be a bit much, I’ll be 107!
Even when I’m not here, I want them to be able to look back and laugh at some of the things we did. Silly things we’ve done, like we used to take all the cushions off the settee and we used to play table tennis over the cushions. Just silly little games that probably every family plays, it just means so much to me. You will probably forget about it after a while, but just go back and do it, it’s a laugh. I want them to be happy when I’m not here.
I’m going to The Hospice for a little bit of respite because I’ve just come out of hospital after having a lung infection and a couple of blood clots on my lungs. It gives me a break and gives Cheryl a break as well because she hasn’t got to sit there worrying over me; she doesn’t go to bed till I’m asleep.
The fish and chips cooked on site are amazing; I’m just going there for the food really! I have no worries at all about going.
The first time we went in we were unsure because it’s the stigma of a hospice. I always thought, wrongly, that people go into a hospice to die.
To go in there and to see what it is like, meet a lot of the nurses as well, it was a good experience for me and now when I do go in there, either for respite or to end my days, I would feel comfortable because it’s the hospice where I want to be to end my days. I’ve no regrets and everything that has come out of it is positive.
The nurses are lovely, I couldn’t wish for a better place to be, maybe apart from home. I have good banter with the nurses, the food is good, and it’s nice and quiet when you want it to be; it can be quite noisy when you want it to, having a laugh and a joke with the care team, who are all wonderful. That’s probably what I like about it; it’s not home but it’s close to home.
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