*PRE-POST DISCLAIMER: Lovelyman and I are not having a trial separation. Nor any kind of separation*
Now that’s out of the way, I’ll get on with what I wanted to say…
Is There Such A Thing As Trial Separation?
When we talk about relationships, and we mention the words trial separation in a sentence, it usually spells the end of said partnership. However, when the other party is a naso-gastric tube named Nelly, it is not quite so straightforward.
Patience is a Virtue
When Nelly and I were first paired up, I anticipated a couple of months, three at most, would be long enough to get me back on an even keel. As you all know, it didn’t quite work out that way. Ten and a half months on, we are still absolutely inseparable. I remember writing after seven weeks, that I had warmed to Nelly, but I could never imagine actually befriending him. My feelings have changed since then.
After all, it is hard not to like the thing that saves your life.
That said, after this long, I am starting to feel ready to see what my face looks like without the permanent claripore strip attached.
At the last appointment with my consultant, we discussed the possibility of re-routing Nelly and opting for a PEG tube for the remainder of our relationship. A PEG is a percutaneous endoscopic gastrostomy tube. In other words, it is a feeding tube which is surgically inserted into my stomach through my abdomen instead of going up my nose and down my throat. Obviously this would make Nelly less noticeable, more concealed, whilst still offering us the support we have come to rely on. I found all this hard to take on board; the thought of having an incision made, however small, for Nelly to pass through seemed a lot more permanent than I had intended our relationship to be.
On leaving the hospital, I did a lot of thinking. I have gained seven kilos in ten and a half months. That’s just over a stone. That’s a lot of weight. I have stopped taking morphine and my baseline pain relief is no longer alarming quantities of opiates. Wasn’t that the goal?
Then, how is it that there still doesn’t seem to be any plan to stop the tube feeding, despite the progress I have made? I couldn’t really understand why that would be the case. I suddenly had this niggling worry that we might all be relying more heavily on Nelly than we really need to. I mean, if you break a leg, you don’t keep walking with crutches once the bone has healed, just in case it breaks again. Do you? I started to wonder if Nelly was being kept in the picture simply so as not to rock the boat.
Once the thought had entered my head, I couldn’t shake the feeling. I had to know whether or not I still actually needed Nelly.
So, I had a long conversation with my dietician, explaining that before I even consider surgical options, I need to find out whether I can stand without sticks. She understood my concerns, and suggested I try a week without feed. Of course, we would leave Nelly where he was, so he would be ready if I needed him, and I had to continue to flush him and care for him with regular PH checks.
First Flush Of Freedom
After the first week without feed, my weight had gone down microscopically, so it wasn’t enough to know whether it was coincidental or a result of not doing my feed. The dietician advised me to try another week and then check in again.
So that’s what I did. All of a sudden, I had space to eat more, and I was enjoying it.
Until the pain started to get worse. In the first week, I had ignored it, telling myself it was just one of those things. By the end of the second week, it was impossible to ignore the increase in my symptoms again. My weight wasn’t going down, but it wouldn’t be long before the pain would dictate that I stop eating as much as I did for those initial days. Then what would happen?
By the end of week three, I had no choice but to concede that Nelly is, in fact, there for a reason. I suddenly understood why my consultant envisages that he will be sticking around for the foreseeable future too.
A Bit More Broken Than I Thought
I guess it hasn’t been quite so simple to fix me as I’d hoped.
When I discussed all this with my dietician, she gave me as much encouragement as she could, praising me for how well I have done and reminding me that none of us want to undo the good work that Nelly has done over this past ten and a half months.
The next morning, I restarted my feeds.
When Neither Choice Really Appeals
I am back on my feed, but I run it at speed in a morning before my day has started, so it’s out of the way. I am still unsure how I feel about having a PEG put in. We have an appointment at the PEG clinic in three weeks so we can find out more about the procedure and hear the pros and cons of rehousing Nelly. There is a part of me that is desperate not to have him up front and centre anymore. It would be wonderful to be able to consider Acting jobs again – casting calls for people with NG tubes are few and far between. I would love not to be the subject of stares when I go somewhere public. Whilst I am far more comfortable being open about my condition, it would be a bonus to think that everyone I pass doesn’t necessarily have to know I have something wrong with me simply by looking at me.
On the flip-side, I am just not sure I am ready to do something that seems so permanent.
Is This My New Normal?
I wasn’t prepared for any of this. I thought we were simply fixing a problem, nursing me back to health by the only means possible. It never even entered my head that this might have to be my new normal. I never dreamed of anything so lasting from my relationship with Nelly. I certainly didn’t envisage gearing up to celebrate his first birthday next month.
Something else I couldn’t have forseen – that I would learn to love him. But, in a weird way, I suppose I have. He is keeping me relatively healthy, allowing my weight to remain stable, and making day-to-day life a great deal easier than it was. For that, alone, I can’t fight my appreciation for the little rubber elephant.
I Don’t Have The Answers
So, what of my dilemma about NG versus PEG? I honestly don’t have an answer, and I am genuinely torn between a desire to leave well enough alone, and a need to fee vaguely normal again, despite the implications of permanence.
Perhaps that’s okay for now. Maybe I don’t need to have the answers yet. Maybe I just have to accept that a break up isn’t on the cards. This process is taking longer than I anticipated, but it is all a part of something positive. I am better than I was. I am bigger than I was. I am healthier than I was. And, while I may not like the idea of Nelly sticking around for the foreseeable future, I might just have to embrace it.
I guess I should thank my lucky stars that I’ve always loved elephants.