Skip to main content

Cancellation

I was visiting a friend that I not had chance to see for a long time when my phone started ringing. I was going to ignore it as I didn't want to be rude by talking on the phone when I was with my friend but something made me pick it up. And I'm so glad I did. It was a secretary from University College Hospital London (UCL) offering me a cancellation- for the very next day! I was so excited that I think the woman on the other end of the phone thought I was mad but this phonecall had just made my day! Earlier in the week I had been to St Marks for a catch up with the specialist pouch nurses and my surgical team and it hadn't been too positive. Basically they told me that my pouch was completely disfunctional and that they didn't think there was anything they could do to make it better. So I either put up with the spasming and a million trips a day to the toilet or go back to a Stoma. A Stoma is the last thing I would want as I've spent the last 2 years having all the operations to make a J-pouch so that I could get rid of my Stoma. And let's be honest, they weren't good stomas so the thought of having a Stoma for the next 50 years fills me with dread. 

I scribbled down all the details and then the excitement started to turn to panic. We are driving to the Lake District for a friends Baptism the following day and were going to leave as soon as we got the kids from school. However the appointment I was being offered was at 2.30pm so this would upset those plans. And there was the added terror of having to go into London on my own. Would I be able to manage to navigate the overground and underground and then walk to the hospital? Don't get me wrong. I'm not one of those women that can't understand the tube map or walk anywhere on their own in the dark. Or I didn't use to be. I was sassy. I was confident. I was independent. But the illness has eroded those things. I was going to say that the illness had taken them away from me but that's not entirely true. They're still there but now they're masked with illness and pain and medication. And I've turned into a forgetful numpty, fearful of collapsing if I walk too far. But there was no way, I repeat, no way that I would miss this appointment so my plans would just need to be adjusted. 

When I told Hubby he was so pleased and got straight on the internet looking at ways for me to get there and thinking of the best way for us to juggle the appointment and our trip way, way up north. We decided that it would be a waste of time for me to travel home after my appointment in central London so instead I would get a train north out of London and the plan would be for him to collect the kids from school and then drive up, collect me from the train station and then continue the journey to the top of the country in the car. 

I went to bed praying that the appointment would be as useful as I hoped it would be. There have been times in the past when I've waited and waited for an appointment with a consultant or specialist and actually they've not turned out to be that much use. But I had a feeling that this one would be different. Fingers crossed

NB x
Labels:

Comments

Post a Comment

Popular posts from this blog

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day!  Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40.  To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works.  I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...
Post a Comment
Read more

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold.  ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days!  I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...
Post a Comment
Read more

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit.  As someone who is receipt of both PIP and ESA disability benefits I find this whole situation…  🔲 terrifying  🔲 baffling  🔲 rage inducing  🔲 disgusting  🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own!  Now I do b...
Post a Comment
Read more