After a 6 hour stint at work, I drove home, picked up the mother and headed to the hospital; via a beautiful coffee shop for a quick caffeine pit stop.
After the weight in, he – consultant extraordinaire, Mark Andrew – gestured for me to come in, with mom in tow, to discuss my “clinic picture”.
Given that I had my Infliximab infusion the previous day and my MXT that weekend, I was in good spirits. I hadn’t had a bad day at work, traffic was light and the sun was shinning. I was happy. I’m still tired from what seems to now be an extended bout of fatigue – because I sleep like a log these days – but that was the extent of my worries. He said that should pass but if it continues, please call the IBD nurses for a chat.
Considering that my current treatment plan – three six weekly Infliximab infusions accompanied by weekly dose of 20mg MXT – was due to expire (as in that, Infliximab #13 was the last in this ‘quota’), he wants me to continue. At least for one more, possibly two, to get some more blood work from me – to do my trough and antibody levels – and then discuss moving forward from there.
This might not be what I was completely expecting, but it was a good middle ground. It makes sense and is sensible – to continue this plan – as I can report and did report, that it seems to be keeping most things at bay these past couple of weeks, nicely fitting in as its now 3 months since I started MXT, it should definitely be ‘working’ now – and get new levels before even doing a MRI. To have a complete picture before we go somewhere else OR try and get funding for Vedlizomab.
Reasoning behind this? If my levels are the same as before – that the antibodies are high and the trough is low – meaning that I am building up a natural resistance to the drug and not retaining any of it; rendering it almost pointless and expensive, a new option is needed. This could be, by that time, Vedlizomab. He said there were many meetings before I was next due for my Infliximab, so it would be potential discussed there. This is looking like a promising next step. There currently isn’t a patient in the NHS Trust (Heart of England) on Vedlizomab; not even a UC patient (for which they already have approval to use with).
But I could, hopefully and fingers crossed, be experiencing a turning of the tide; with this combination of weekly MXT and six weekly infusions, and they don’t disrupt that. Only worry here, is how long can I be on MXT, realistically? It is chemotherapy after all, a toxin to my body. Something to discuss, nearer to the time.
Me and mom had a blazing row about how quick I have been to suggest that surgery is an option. I tried my best to explain why I’m making it easier to talk about it nowadays is because I was – and probably still am, to some extent – petrified of someone ‘knocking me’ unconscious and rooting around my insides. Does anyone else feel like this? Does this ever lessen? Do you just get more used to the relief of hopefully waking up without the problems you went under with? I know I can think and talk about surgery at the moment; as a pretty healthy person, it must be very different when it is your only option because the pain and problems are that bad. I haven’t gotten there yet. But I want to feel comfortable when I do.
She suggested that I fight to try everything else possible before I even contemplate surgery as a reality. That they will not do it unless it is necessary. And right now, it is not. But you know what else isn’t necessary? Being constantly pumped full of toxic drugs! Drugs that come with vomiting, diarrhea, nausea, abdominal pain as side effects; all the things I deal with anyway!
I understand the risk and possible complications that come with a first surgery – more likely to have a second, third etc, developing other problems, never been really ‘fixed’, follow ups, recovery – I really do, but she – and many others – don’t understand how much of an emotional battle IBD can be. It can be hard to switch your mind off from what is going on, or what could happen. I’m used to planning to be ready and hydrated for my infusions, so I don’t get delayed or delay anyone else. I always get nervous that they won’t get a vein and I’m stuck not having it. So, mentally preparing myself, is part and parcel of my disease.