Life Lately | All This Familiar ‘Newness’

This feels oddly familiar. I’m not sure I like it.

I’ve found that this phrase gets said alot in regards to my Crohn’s Disease. Things come and go in waves, in cycles some years and they almost always feel like deju vu. But for the most part, the fact that they are familiar gives me a certain ability to cope with them, time and time again. It sucks that the same things occur on a some-what semi-regular basis but I take comfort with the mantra; “I’ve done it before, I’ll do it again.”

A certain piece of mind, if you will.

This week, I made the firm transition from Good Hope to Peterborough City when I saw my new Gastroenterologist. Gone are the days of being smiled and waved at by plenty of the departmental staff, the familiarity of the hospital, of the memories, really;  this was all new, all unfamiliar and despite knowing I had to make this change, I was still incredibly nervous and apprehensive.

I wanted to know I had made the right decision to move. I wanted to know that I was going to be taken care of, that I was going to be taken seriously and desperately hoping I wouldn’t have to be negative. Thankfully, it was all smooth sailing. I complied a list of questions, most of which were answered and I came out afterwards, without any delays on the appointment or the subsequent blood tests, with a feeling of satisfaction.

First appointments with new doctors are always abit unfamiliarly familiar. In the sense that, setting the tone is important. Whilst you want your new doctor to be sympathetic and treat you well, you should also be direct and straight to the point; which can come off being bossy. It’s a fine balance, but you learn. I had much to ask my new consultant which included:

  • If I could have my flu jab, given how soon my next Vedolizumab infusion was going to be.
  • How and when they were going to monitor my Vedolizumab.
  • Following that, how were they going to monitor my IBD in general.

I made more notes about my ovarian cysts, my rectal stump, my deficiencies as well as my liver monitoring but being so new on Vedolizumab and having recently been admitted (July) the conversation stuck to my IBD and treatment plan. I gave a quick but accurate summary of my surgeries and my needing to have Vedolizumab on multiple occasions in the last eighteen months and it was concluded that this was going to be my long-term plan. Good to see my application for the funding of the drug actually specified that I wasn’t to be removed from it, regardless. He was somewhat shockingly impressed that my first attempt of being on Vedolizumab was weeks after it was NICE approved in 2015. Yep, that’s just how my IBD rolls, I said, half jokingly. But joking aside; I didn’t get to stress just how unpredictable and complex my IBD can get, especially these days. We did my usual IBD / Vedolizumab bloods and he would see me in the New Year for an update on the treatment plan; possibly schedule some testing, maybe.

I have another appointment to see the same team, in about six weeks time; in between infusions. Unsure why, as this isn’t what was discussed and it’s currently on a date I can’t make. But we go forward, building new relationships.

In these early stages, nothing is yet as it I would like it. And unfortunately, I am always going to compare my IBD nurses to my two wonderful ones who gave me constant care when I needed it the most. For all those admissions, those infusions I would need, the scopes I would have, the constant emailing some weeks, the reassurance I needed from time to time. I haven’t had to need any of that yet so I can’t compare. But I can’t help but see the differences. One good thing has already come from being in Peterborough; appointments get sorted, promises are kept and I am kept informed. That is all I can ask of them right now, before, anything else happens.

I mustn’t be afraid to fight, to stand up for myself or speak when I need to express my opinion. 

I need to remember that and not be blindsided by all the familiarity of the newness.

Life Lately | Being Organised

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Life Lately | The Guilt, Oh The Guilt

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Life Lately | Struggling in The Heat

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Life Lately | Getting My Career ‘On’

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Life Lately | Stuck, Confused or Lost?

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Life Lately | The Big Move

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The 29th Year

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Life Lately | Getting a Health MOT

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Life Lately | Pushing my Limits

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Life Lately | Making Progress

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Life Lately | Finding Space to Relax

Life, right now, isn’t busy for me but it’s a complete struggle to relax. I say ‘busy’ in the traditional sense that I still currently unemployed so I don’t have a Monday to Friday 9-5 keeping me occupied. But, that doesn’t mean I haven’t been working. I’ve been spending my time writing and working on improving my ‘blogging game’ pretty much since 2017 started. Despite this, once I am through with my tasks for the day, I find it so hard to tear myself away from my phone and really relax. I used to be able to pick up a […]

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Life Lately | The Challenge

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Life Lately | Stoma and Ostomy Lifestyle

So, I’ve been doing a lot of specific blog posts on ostomy advice and milestones. What I haven’t been really talking about is what is going on with me, personally. After my first surgery, we had a game plan on what I was going to achieve and when. This included how well I was going to recover, how I would get on with my chronic illness wway from surgery and when I would return to work. Returning to work was going to mean retraining and I wanted time to mentally prepare myself for that. But nothing went to plan. Nothing. […]

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