Hospice

Hi! I’m still alive!

(Last time I was visiting my lovely nurse friends up at Medical Oncology — I’m not under their care anymore but I do still have to go up once a month to get my PortaCath looked after — and they asked me how I’ve been. “Still alive, can’t complain”, I said, a bit flippantly. The two lovely nurses both looked at me very intensely and said “Just keep living. That’s what we say, just keep living”.)

So I’ve been off chemo and under hospice care since December. All that has really meant, since I’m relatively healthy, is that every couple of weeks or so a hospice nurse rings up to check on me and make sure I am feeling okay*.

I’ve had this nagging cough since Christmas, which has slowly been getting worse, so on Tuesday I had an appointment with a hospice doctor for a check up. When I say my cough has slowly been getting worse…at Christmas, it was the minor, infrequent throat clearing cough you get with a mild cold. By last week, it was, as the hospice doctor put it, similar to the kind of violent paroxysmal coughing you see in whooping cough, complete with frequent episodes of coughing violently until I would vomit. Very glamorous.

Last week I had a chest x-ray and a blood test in preparation for this appointment.

Good news: My bloods are awesome. Liver function, though slightly elevated, is nothing concerning.

Bad news: my cough is 100% caused by the numerous and growing tumours in my lungs, which is, as we know, something that can’t be cured. I mean, I fully knew this going into the appointment, but…y’know. X ray confirms it. I politely declined the doctor’s offer to show me the x-ray of my tumour ravaged lungs. I don’t need to see the grim reality. I know the cancer is there, that’s enough. Ignorance, in this case, is bliss.

Up until now, I’ve been prescribed low dose liquid morphine to try and control the stupid cough. You’d think morphine would at least be a BIT fun, but all it does is taste kinda sour, make me drowsy and occasionally stop me coughing too violently. Lovely hospice doctor, after examining me, suggested that we try something else: dexamethasone, the corticosteroid that became a bit famous after being used for Covid 19 patients to help them breathe. Corticosteroids have quite a wide range of uses but in my case we are using it for 3 of its known effects: it reduces inflammation (e.g. in the airways and lungs), it boosts appetite (cos my appetite has been very small and I’ve been losing weight) and it boosts energy. I’ve only been taking it for a couple of days but so far, the effect on my cough has been remarkable — I’m breathing easier, I’m less tired and grumpy because I’m not exhausted and sore from coughing all day.

And that’s what hospice care is. When your condition can’t be cured, it is doing what can be done to keep you comfortable, to keep your quality of life good.

The other thing that struck me from the appointment was this unique quality that hospice staff seem to have. They’re all so kind and caring and gentle, without being pitying or ghoulish or condescending, and most essentially: they keep it real. My mum came to my appointment with me and at one point got a wee bit teary (not over anything in particular, I think sometimes — because I’m relatively healthy, still up and about, not wasting away, it’s easy to forget, or at least compartmentalise away, that the long term prognosis isn’t good, and appointments like that are a bit of a hard reminder). The way mum put it was that when we initially got the bad news she told herself she’d adapt to “the new normal” but she can’t, because none of this is normal.

The hospice doctor was so kind, and was like “of course not, because a new normal suggests something static, rather than what it is, which is a situation that is always changing and always unknown. We don’t have a crystal ball for what is going to happen to Nessa next. But we know that at some point, we don’t know when, her condition will decline. My job is to help you navigate that, to keep Nessa comfortable, to help you through the process”.

I really appreciated her not shying away from the reality of the situation. Sometimes it feels like I want to, because it will make people sad, or uncomfortable, or awkward. But she was so matter of fact. Denying it is going to happen doesn’t stop it from happening. Learning to accept it is the only way forward.

*Hospice is a 24/7 service, which was explained to me early on. While I’m actively checked on periodically, if my health were to suddenly decline, or I had a pressing question about something, I’m able to contact the doctors and nurses at hospice around the clock — and actually encouraged to, no matter how trivial my concern may be.