The weight of relatively minor inconveniences

The most concerning moment in my initial treatment for leukaemia back in 2005/2006 came when I managed to pick up an e-coli bug while neutropaenic and was rushed to the Intensive Therapy Unit (ITU), where I was rapidly filled with blood, plasma, antibiotics, tubes and anything else anyone could think of that might help me to keep my bodily organs functioning. It was a frightening time for my family, who stayed locally and spent all the time they could in the waiting room next door, as I fought to regain some control of my breathing before the doctors would need to proceed to the dreaded prospect of intubation. I had been previously warned for a different situation that if I were intubated while neutropaenic, I would almost certainly develop pneumonia, and the prospects from there would be bleak. Something I was keen to avoid.

In a way, I was probably the least perturbed by all this, as between my general bodily collapse and a serious lack of sleep, I was far from being conscious of everything was going on. At some point Gobby, the wonderful junior sister from the Ruth Myles ward, appeared down in my room declaring that she’d realised what I needed at that point was a girlfriend, so she’d found me one – and to my baffled amazement she was followed into the room by a pretty young nurse… In this case my happy confusion was unfortunately short-lived, though, when Gobby revealed from behind her back a blonde doll she had bought to keep me company. The NHS is great, but I’m not sure they stretch to free matchmaking with nurses.

It’s fortunately not that common to be admitted to the ITU, but it’s even less common to leave it; happily, though, that’s what I managed, after improving enough after the dreaded ‘green night’ (I think all the aprons were green, so my overwhelming sense of that evening, with my family members trooping through to say what they thought might have been potentially goodbye, was of green) to avoid intubation and gradually recovering the full use of my lungs and other organs. I went back to the Ruth Myles unit and gradually all the tubes were removed, until I was left with just the feeding tube. Despite my situation and comfort having improved enormously, however, I was still definitely on the grumpy side, and Harriet and Freddie by my side were getting thoroughly fed up with my lack of decent conversation.

As soon as the feeding tube came out, however, I came to life. I think I blasphemed (“Thank God for that; what a relief”), but kept my curses limited and instead subjected Harriet and Freddie to the torrent of verbosity they hadn’t realised they were probably better off having previously avoided. Harriet was amazed by the transformation, and admitted to having been worried about how my escape from the ITU and subsequent surrender of all the tubes had failed to bring me back to anything resembling decent form.

Often, however, it’s the smallest annoyances that can put you off track more than the huge, overwhelming ones. Last weekend I was plagued by mucositis as a result of a clash between two of the drugs I was having, and it completely threw my composure. Admittedly there are far more gentle side effects to face than the stinging, uncomfortable mouth provided by mucositis, but compared to some of the things my body has had to face it would be easy to imagine it as a relatively minor inconvenience, especially as various mouthwashes and painkillers could do something about relieving the pain. It didn’t help that it stopped my sleeping well, which proved to be self-fulfilling in many ways, as feeling run down contributed to my failure to get the rest I felt I needed.

I’m all for focusing on the little joys that get you through each day, but try as you might you can’t always avoid the counterpart to the positive moments, which is when the smaller annoyances become overwhelming. The Power of Now will do nicely for the emotional concerns, but when it comes to physical difficulties, there’s only so much relief you can gain from looking forward to the end of the pain and/or to more comfortable times. I remember back in the day being told we were nearly ready to take my feeding tube out, but just needed to let the box of nutrition to run through – I was delighted, until they told me that would mean about 24 hours; despite everything I’d been through, the prospect of another full day and night with it was overwhelming. Fortunately I persuaded them to stop it sooner.

The drug clash has now been sorted out, my mucositis has cleared up and last night I managed to sleep better than I have for a while. As a result, I’m feeling a lot more normal and am hoping that the worst is over in terms of side effects. It’s easy to pretend that everything is going to go smoothly, but we have to be as ready to face the relatively minor inconveniences as we are to confront the more serious moments.

Best of all, of course, I no longer need the NHS to provide me with a stuffed doll for support through the difficult moments, as Mariacristina is there to hold my hand, distract me from the minor struggles and keep me focused on the wonderful life we are living together. That nurse missed her chance, I’m afraid…