It's on, it's off, it's on again

Having spoken with the admissions clerk at St Marks before Christmas I was told that the 'Fanny Assessment' and stoma removal or takedown would happen on the same day to avoid me having 2 general anaesthetics.

I was told that this would take place on the 9th January but then hadn't heard anything so I rang them yesterday.

The lady I spoke to told me that actually the 9th might not go ahead now as although they had the theatre time they weren't sure if they had the right surgical team available to support Surgeon A in the procedure.

When I got off the phone I wanted to cry. I had spent all of Christmas getting my head around the fact that I would be having the operation in early January and not March time as they told me at my outpatient appointment. And now it might not happen.

If it didn't happen what would I do? I can't just sit around the house watching Jeremy Kyle and doing craft things, I would need to go back to work.

You see I am employed but currently not receiving any pay from my employer. I need to try and claim Employment Support Allowance benefit but to be honest that requires a whole post of it's own!

The idea of going back to work is a scary one. I have been off since June 2013 and the thought of having to get up, get dressed and go into the office and actually have professional conversations is something I find quite daunting.

So now I'm thinking about going back to work and how I will juggle my medications, TPN, stoma and everything else medical not only at work but in the mornings to make sure I actually get there on time.

My friend was round with her kids and kids are a great distraction. The world could be coming to an end and they would still be asking if it's time for lunch yet.

Talking with my friend over lunch we decided that 'what will be, will be' and if it was meant to happen on the 9th then it would and there was no point stressing over it.

This is a huge breakthrough for me as over the last few years I would have been ranting and raving, flapping and stressing and generally giving myself a headache. Learning to accept that there are things you can't control in life and these things shouldn't have energy wasted on them has made my life much happier and calmer.

But then yesterday afternoon I got a call from St Marks to say that a team had been put together and it was go, go, go for the 9th.

My head was all over the place. First it was January, then probably March, now definitely January. No going back to work for now. No getting suited and booted. But this meant an operation in a weeks time.

Now I felt sick. It is actually happening. Bloody hell.

Now I knew I had only 1 week to get my house in order. Literally and figuratively speaking. And off my mind goes.

I need to clean. I need to change beds. I need to do laundry and ironing. I need to plan meals and do food shopping. I need to pack. I need get waxed.

Stop!

No. All of things don't need to be done. It would be good to do them but what I need to do is hug my children. Tell my husband I love him. Have a night out with friends to talk about something other than stomas and hospitals.

So that's what I will be doing.

Starting with a date night to the cinema with my husband.

NB x

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...

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...

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...

More than just a bag lady

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