Back in November, I thought, it's been quite a long time since my tumour, I should probably show my face and remind people I'm still alive. My insecurities and desire to avoid people, had just been a way to avoid life. But getting back into life isn't so easy after a long period of dodging it. I'm forty-two now, so I think that's mission accomplished, time for this old dog to learn some old (but new to him) tricks. Fortuitously, I received a text from my GP surgery. Their annual Community Mental Health Event was being held at Stafford Rangers Social Club. I'd been there a few times and knew it had excellent access. My main worry had already been dealt with, I knew it had wide corridors, smooth floors, a big function room and everything was on one floor.
As I had only been thinking about doing something like this for many minutes, had I manifested it? Or was it just pure coincidence? Probably the latter. If I were you, I wouldn't cancel those tickets for Paul McKenna's next tour. I think there's more to manifesting than just having a bit of a think.
I stuck to the idea of attending rather than making up some reason why I should take the easy way out and not go. I booked a taxi and then cancelled it immediately as my Dad said he could take me. We got to Stafford Rangers and Dad got out to get the chair and assumed I would expect him to push me around in there. "No thanks, I'd rather go in on my own". I said. I'd got my big boy pants on today! 💪
I wheeled myself in, self conscious of the fact that other people in wheelchairs seem to just glide along, giving the wheels a little push every few metres. I however, constantly correct my direction and stop the start like an old spluttering car.
Two women at the door greeted me and held the door open, told me to go along the corridor and turn right at the end. There was no issue of access. As I remembered, the floors were flat and smooth and the corridors were wide. I could just glide to the end of the corridor.
Could... but didn't.
Another woman greeted me at the door and told me there was a bar with refreshments to the left. I thanked her and went forth...before doubling back and asking her what do I do. I thought this was going to be a room of people all sitting in rows watching a talk/presentation or two. It wasn't. About fifteen charities had tables around the room with one or two people sat at them. You would talk to a charity that took your interest to get some further information.
I spoke to a few charities, but they wanted me to go for an interview and then wait to see if I'd been selected. Like I'd just applied to college. I didn't like how formal this was, I didn't like that I had to audition and if they deemed me worthy of help, I could attend. Katherine House Hospice were here as well. It was one of the first tables I encountered on my circuit. I was reading the information on the table, just being nosey, when I was approached. "Can I help you?" I knew what table I was at and fortunately, had no need for it. I didn't tell him that straight away though and had a chat, I didn't feel comfortable telling him "no thanks" . I thought Katherine House was a small charity that offered end of life care to a select few. It's actually a large charity that has two-hundred employees and six-hundred volunteers. They have a therapy and wellbeing clinic, a lymphoedema clinic, end of life care. It costs them about four million pounds a year, a lot of which is from donations. They rent space in many shops around Staffordshire where you can donate furniture. It's a big machine and a very worthwhile cause. Katherine House Hospice.
One of the first tables I came across was Andy's Man Club. The design of their station caught my attention. It was black with a hand in white making the ok sign. I stopped and a guy came out to talk to me. They are a group of men that meet up every Monday at Stafford Rugby Club for a couple of hours and gives you the chance to chat to a group of people who are all there for the same reason - to talk. I asked how many people go and he said it varies week by week but it could be as many as sixty. Whoah, that's quite a lot I thought. Straight away I was thinking about what it would be like to enter a room where sixty people all turn and look as I slowly wheel into the room, my wheelchair stopping and starting, constantly changing direction. My imagination was was running riot. I started trying to make my excuses for not going. "I don't think people will be able to understand me, I said" "We're chatting now and I have no difficulty in understanding you," he replied "I don't know if I feel comfortable talking in front of that many people." "There is no obligation to talk, you can just listen and socialise in the breaks. Some weeks I don't say anything, but last week I had a lot to get off my chest and you couldn't shut me up."
So he was a volunteer who attends these meetings himself? He handed me a flyer and I said I'd go.
And I intended too. And I did.
The first rule of fight club is you don't talk about fight club. Oops sorry.
Same first rule, different club.
The first rule of Andy's Man Club is you don't talk about Andy's Man Club.
I shocked us both and kept to my word. Stafford Rugby Club kindly allow us the use of their facilities. There is loads of parking. There's even lots of disabled spaces which a lot of the time are left free, although there is rugby practice as well and obviously all the disabled spaces get used first. There's always people on the door to open the door for me on arrival, but I have to ask somebody to let me out as the doors aren't automatic. We meet on the first floor, but there is a lift for us mobility challenged folk.
The first time I went the guy I met at the Mental Health Event was there as well, so I wasn't in a room full of strangers. Which I am very appreciative of because I can guarantee I wouldn't have gone again the following weeks otherwise. About fifty people attend. We all sit in a big group, introduce ourselves and then get split up into smaller groups with at least one (but usually two or three) volunteers to head up the group. Oh and gallons of tea, biscuits and one of the members of our group brings a sack of pastries.
I've been going for a few months now and take advantage of the chance to talk to a captive audience. It's right what people say, it really does help to talk. We are always much harder on ourselves when left with just our own imagination. Talking to others gives me the true perspective of other people's opinion of me - which is always different to my own negative view. It's taken me a while to realise that I just try to deflect by attempting to be funny and never really speaking seriously. Andy's Man Club is a great start to my week, there's always somebody who can offer you advice, or quite often they don't offer any thoughts, you just feel better having spoken your thoughts to other people, rather than just thinking them.
I enjoy going, it's a change of scenery and a good chance to socialise and get things off my chest. I don't think I'm too good at the socialising in breaks. Everybody's talking in a big echoey hall, which makes it hard to be heard.
If you've read my book, you will know that I wasn't particularly complimentary following my initial interactions with the Social Services.
Alice phoned the Social Services and was told they wouldn’t look at doing the conversion because they needed to assess me in the already converted environment to see what needs are required to be catered for.
There was a major problem with this ridiculous rule. The Haywood couldn’t discharge me until they were happy I was going back to an environment that catered for my needs.
I simply don’t know what happened here, maybe there were some crossed wires.
The problem as far as I’m concerned was Social Services, though when I’ve used them since they’ve been great. Admittedly, they’ve only project-managed modifications, but things have gone incredibly smoothly. I think whoever was running things at this time is to blame.
Well, this is one of those occasions where they were very helpful. They arranged for the front part of my conversion (which had remained as a garage) to be converted into a utility room/porch/entrance thingy. This would have a raised floor so it would be on the same level as the bedroom. Originally, I used a portable metal ramp to get up to the bedroom from the garage. A permanent ramp would be built and fitted allowing me to get to the front door.
It looks great and it doesn't look out of place, it looks like the ramp has been here as long as the house and is an original fixture. I was very happy with it.
A few weeks later I was walking up the ramp from my Dad's car as I do most evenings, when I took a mis-step and reached for the bannister at the side to steady me. The fixture moved. It supported me, but I hadn't put much weight on it - between my legs and Dad's support, I didn't overly rely on it. On investigation it was discovered that the ramp wasn't attached to the drive, it was held in place simply because it was clipped in to the rest of the structure.
I informed the Social Services and the company in question returned to screw the ramp into the tarmac. I didn't understand how a company who specialise in installing disability ramps failed to remember this key component.
Over the next few years I had got used to buying cartons of salt to pour on the ramp when the weather was cold. The ramp is lackered, making it like a piece of shiny plastic, it was impossibleto scale on my own as the wheels would spin. When I was being pushed, the person pushing couldn't get any grip. It started to dawn on me that this precaution wasn't needed when using my old ramp - which is at my parents house now. It's metal but their are tracks and rivets meaning that it's not slippy. I was starting to realise that although my ramp looked great it had the functionality of an ice rink.
I then noticed another short coming of my ramp, I can't self propel up it. My wheelchair pulls involountary wheelies. I have to reverse up the ramp as this allows my weight - which is predominately resting against the backrest - to be at the front. This isn't a fault of the ramp, it's as long as the drive allows and the incline is what it is. I have a large bulky wheelchair with arms to stop me flopping out. I have a friend with a lighter, sportier chair and he gets up it without a problem, he can get on the ramp already doing a good speed so he has momentum. I can't do this, I have to go bit by bit, I push with my feet whilst turning the wheels.
What is somebody's fault is putting a pointless bit of metal at the foot of the ramp. It is riveted though, so there is a bit of grip... in the dry. When it rains this ramp is a hazard to anyone - disabled or not. Fortunately the bannisters either side have rivets, so I can grab these and pull myself up.
Back in 2007 I had a brain tumour, it was a Hemangioblastoma. It's a rare non cancerous tumour that occurs in about 2 to 3 people per million per year. It was supposed to be a fairly simple operation. Hemangioblastoma's are slow growing, and the tumour was 'away from all the major clockwork'.
Unfortunately MRI scans had failed to portray how “entangled” the tumour had become in hundreds of blood vessels.
Any of the blood vessels could be an essential supply to the brain stem. Each one the surgeon cut was likely to starve a part of the brain of oxygen, so he knew he was going to cause damage, but it was near-impossible to predict to what extent. I’m now forty one, I was twenty four when I had my brain tumour removed. I'm in a wheelchair, have Ataxia and have double vision and speech problems.
I've written a book; Brain Tumours, John Bonham and Fat Pigeons. It’s a cautionary tale, but also one of hope. I feel very fortunate to be able to share my story, and who knows it may help somebody going through similar times. It may help somebody identify the problem instead of making the same mistakes I did.
Plus, you want to know why fat pigeons are mentioned, don't you...
Several times throughout the book I refer to funny stories from my younger pre brain tumour days. This is a short video I made with my friend Helen Lawson narrating it.