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

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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