Yet another week overdue, Infliximab #12 – the second in my three 6 weekly infusions – happened on June 5th.
Had my bloods done the day before – as I met with the new Gastro Dietitian; details to follow – as per usual, which always means one less places for a canulla can go.
After being off for a couple weeks, it was a while before the infusion nurse even got a good vein; my forearms were shot to shit with needle attempts. I was sore and getting dehydrated too.
But once the infusion was going, it was plain sailing. I knew that from the weeks prior and how unwell I was feeling, this was going to do some good or it was going to do nothing. I could give it 10 days before I really knew how good it was actually working. Being the second round of these special three, I expected it to finally be doing something; after all I had been on Methotrexate (MXT) for a good couple months now, maybe that was the final piece of this puzzle?!
Following a month or so of feeling rather unwell and hardly eating, losing weight and generally feeling much unlike myself, it was time to see the dietitian and sort out some elemental diet. I met with her and her new colleague bright and early on a Thursday morning to discuss what was expected of me on this new diet. Let it be said here, that I have never been on an elemental diet that was longer than an couple days. This was back in 2011 during my last hospital admission, where I was somewhat coerced into having an NG tube placed. I subsequently refused to eat because it was so uncomfortable. This was my lowest point. I needed to buck up and get eating again. So, once the tube was out, I was on a plain diet and some Modulen drinks the nurses would make up for me as “snacks”. They worked. But this time around, I was given Elemental 028 Extra drinks – already made up, flavoured and fortified with the right calories and nutrients. I was given a taster pack to try and she would see me on the ward the following day at my infusion to set up my regime.
Considering how unwell I had been feeling, and in hindsight, how unwell I would continue to feel once starting it, I didn’t get told (or I didn’t ask, either one) what to really expect. What side effects were to be expected? Which were cause for concern? What if I wasn’t well suited to it? What if it caused more pain? What if I couldn’t manage it? Who could I speak to about my frustrations? Lots was left unanswered but at the time I just wanted my Infliximab to pick me up. I knew that eventually I would find a job and I would need to manage myself with these drinks, better than I was dealing with everything at home. It was going to be a change and a challenge.
The week after my infusion, I was still feeling well. I was starting my drinks the week after and I was hopeful this would help me out in so many ways – be able to go to work and not worry so much, I would feel more “normal” and in control of my health, it could really benefit me when it came for my Infliximab review / 2nd opinion referral in July.
This referral hasn’t been hard to get – its been discussed between my GI and myself several times since February – but its alot of jumping through hoops. Waiting for the MXT to come into three months, waiting for my third infusion before we get new MRI results. Waiting then to be seen at Nottingham. I’ve only ever known my own hospital – I was sent there, I was diagnosed there and I have had all my procedures and clinic appointments there – so getting into another system is taking time. But for me – the inpatient patient – I just want fixing. Even if this doesn’t fix me, I hope it brings me some relief for a while. I’ve missed being well enough to be at work full time. I’ve missed being able to go to the gym, swimming, the pub, on long trips, flying abroad; because I’ve felt this is holding me back. It’s not who I am.. and its taken over in 2015 more than ever.
But lets keep fighting it all, shall we?
Baby steps, Louise, baby steps.