Meeting with my MP

On Friday I had a meeting my local MP. He’s a Tory, which meant that I had a dilemma. Did I go and ask him for help in chasing up my surgery date or did I ask him about ‘party gate’ and why he continues to support Boris? Part of me wanted to go in there and grill him on why he’s not written to the 1922 committee, why he always votes with the whip even when it means his constituents will suffer as a result and to make him understand that I’m angry. Every time I switch on the news there’s another scandal, another cost of living increase, another example of the rich getting richer and the poor getting poorer and I’m fed up of it all. Fed up and enraged.

But when I wrote this on my Facebook page last night…

…a friend wrote this comment which got me thinking… ‘Definitely ask for help for yourself. Having a go won’t achieve anything as they’re all deaf and will say exactly what you want to hear and then deliver nothing. They’re all the same just different coloured leaflets and ties!’

Going in there and ‘having a go’ might have made me feel good for all of 5 minutes but what would it have actually achieved? Nothing. I’m sure all he would have offered me would have been the party line and some platitudes. So I decided that I might as well see if he is able to do something that might end up making a huge difference to my life.

I’ve never met with an MP before but I have sent emails in the past when something has really pissed me off. Having now had my surgery postponed three times I figured I had nothing to lose by asking for his help. The MP’s surgery was in a local community centre and I wasn’t surprised to see a police car sat outside, especially after Sir David Amess was stabbed to death last year. He was running a bit late so I waited and then went in to see him. Obviously our politics are polar opposites but I have to say that he seemed a decent bloke. I’m not one of these people that thinks all MP’s are lying arseholes (just the prime minister!) and I think that in general they work incredibly hard.

He listened to what I had to say and I tried to explain my complex medical situation in the most basic of terms. He seemed genuinely concerned by the fact I had spent so much time in hospital and that I’ve been unable to get the surgery I desperately need due to the huge waiting lists within the NHS. I did touch on the fact I’m also waiting to have 3 teeth removed but he struggled to grasp why this was such a serious issue for me so I decided to focus on the need for surgery.

He explained that he couldn’t influence the hospital but he could write to them on my behalf and enquire where I am on the waiting list and when I might expect to get a surgery date. I stressed that I wasn’t looking to jump the queue and that I had no complaints with the treatment I had received within the hospital but that not knowing when I might have surgery has an impact on both my physical and mental health and that while I wait I will continue to yo-yo in and out of hospital.

Yesterday I received this email from him:

So fingers crossed he gets a response from the hospital trust soon and that this might get things moving 🤞🏻

Light at the end of tunnel

I’m sat writing this blog post in St Marks, the specialist bowel hospital in London. So much has happened in the last few weeks; it’s all been a bit of a whirlwind. But I finally feel like there is some hope at the end of the tunnel. Let me tell you why. At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own. I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a minute. Th

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened. I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.

The wrong size line

I’m on the M1 heading back to Nottingham after a road trip to St Marks to get my line repaired. But this is me, and as usual it wasn’t a smooth ride. More like a bloody shit show. So what happened? Let me tell you… After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement. When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that

More than just a bag lady

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