Sunday, January 24, 2016

What I've learned so far

Last week I passed the half-way mark of my scheduled eight rounds of chemotherapy. It’s been three months since I was diagnosed with cancer, but the time seems to have passed quicker.

Here are a few things I’ve learned along the way:

  1. It gets better. When I look back I realise just how far I’ve progressed in my treatment. In late October I was a mess – a giant tumour in my upper chest, a blood clot in my left arm, a massive bruise on my right abdomen, a nasty swelling in my head and difficulty breathing. At the time I thought that would be my experience of cancer. But all those symptoms and complications eased, the chemo started to work and things fell into place. Now some days I feel so well and energetic I need to remind myself I have the disease. Having that bad experience early on makes me realise how much better things are now, and how much worse they could be. Those bad days may yet return, but for now I can enjoy the contrast. And beyond the physical symptoms, the medical tests show we’re making good progress.
  2. Everyone has a cancer story. Given that more than 125,000 Australians are diagnosed with cancer each year, it shouldn’t be a surprise that so many people can talk about their direct experience with the disease – either they’ve had it, or a family member has, or a colleague, or a friend. Many of the stories are of survival, and life afterwards, but others are of battles fought valiantly. It’s a great comfort to hear vivid accounts from people who have been through it, which make me feel like I’m being welcomed into a club, albeit one I didn’t want to join.
  3. The sick person gets to set the tone. Knowing what to say to someone who is facing disease is really tough. Knowing what tone to strike is also tricky. I’ve learned from recent experience that people comforting the sick match their tone to the sick person. So if I’m feeling morose and self-pitying, the person I’m talking to will appear suitably glum. But if I’m positive and upbeat, they’ll laugh and take it easy. Given I’d rather hang around at a café than a funeral parlour, I usually go for the second option.
  4. Familiarity breeds knowledge. When this whole caper started, I knew little about cancer and the drugs that treat it. The doctors would casually throw around terminology and I’d be lost. But now I feel like something of an expert. The array of drugs and infusions whose names early on confused me are now clear in my mind, and I can banter with the best of them about the merits of Rituximab, Cyclophosphamide and Pegfilgrastim. Throw in some of the non-cancer ailments I’ve come to experience – pneumothorax, subcutaneous emphysema and peripheral neuropathy – and I feel like something of a medico. The explanations help with understanding, but it’s the repeated exposure that makes it stick. Now, where’s my stethoscope?
  5. Regular faces make it easier. I really like my cancer nurses. They are kind and knowledgeable and always (appear) pleased to see me when I head to the cancer centre a couple of times a week for a check-up or a blood test or a wound dressing. But the best part is that there is the same great team of people every time I visit. They know me, they know my family and they know my medical history. It makes it easy to deal with people with whom you have already developed a rapport rather than having to start afresh each time. I suspect this is one of the strengths of having fewer patients – I understand big-city cancer centres can be rather impersonal experiences. That would be tough.
  6. Team effort. This whole experience has been made so much easier by having my wife, Melanie, by my side. Clearly this is not the way we wanted to go through our first pregnancy, but we’ve made the most of it. Between us we’ve managed to get all the vital things done around the house, managed to keep up with our steady list of medical appointments and provided the quality emotional support that makes both cancer and pregnancy so much easier to grapple with. Facing this alone would be much tougher.
  7. Sure beats waxing. Everyone knows about the effect chemotherapy can have on the hair on your head. Less remarked upon is the effect it has on the rest of the body, which goes much the same way. At the risk of revealing more than I ought to, I admit to enjoying the smoothness of my belly and legs now that the thin wisps of downy hair have disappeared there. The skin now has a baby-like quality. After holding on tight for a while, my eyebrows and eyelashes seem to be disappearing as well, which is rather less welcome because it makes my head look like a full moon and I fear hippies may start dancing near me.
  8. Don’t fight it. Early on I was determined to maintain my regular schedule as much as possible, using a business-as-usual approach to downplay in my mind the significance of what I was enduring. But my body soon made clear that wouldn’t work. When I’m feeling strong in the recovery phase, I can live life as normal. But when I’m part way through a cycle of treatment, and my body is exhausted to the point where a pack of wild horses would give up on raising me from my bed and return to the stables perplexed at the task they’d been given, I’ve gotta listen to the signals. Denying the realities of my body will leave me feeling terrible and make it tougher to get my strength back from the next cycle. Better to just go with the flow.
  9. Use the time wisely. The body may be weary, but the mind is still lively. This might be the only time in a decade or more when I get a chance for prolonged periods of rest (we have a child on the way, remember). It seems a shame to spend that time watching crap on YouTube or browsing the internet. So I’ve been determined to use my time reading things I might not otherwise find the time to read. I’ve finally got around to Christos Tsiolkas’s “The Slap” (a middle-class hissy fit), after reading George Megalogenis’s “Australia’s Second Chance” (compelling case for more migration), Allan Behm’s “No, Minister” (slightly earnest account of life in a ministerial office) and Elizabeth Pisani’s “Indonesia Etc.” (left me yearning to head back). Beyond that I’ve also been wading through the pregnancy and childrearing books on our self – filled with so much contradictory advice it seems best just to trust my instincts … and let the kid fend for itself.
  10. Help people help. Since diagnosis many people have come forward offering to help. At first I was thankful for all the goodwill, but a little overwhelmed. I’ve learned to give a bit of guidance to nudge people towards things that really make life easier for Melanie and I. For my family it’s been regular visits to help make sure the household’s on track. For my parents-in-law it’s been preparing the house for the new baby. For my work colleagues it’s been giving me the flexibility I need to get on with the job during treatment. For friends nearby, visits at home or at a café have helped keep my sane. For people at a distance, phone calls and the occasional hamper of goodies have been most welcome. I’m lucky to have them all, and I’m glad I’ve found ways to harness the good vibes.

So that’s what I’ve learned so far. It’s been a challenging three months, but a time when I’ve discovered physical and emotional resilience I wasn’t sure I had. If the second half of treatment goes as well as the first, I’ll be in remission by April. And if it doesn’t, the battle will go on a little longer. Either way, I know I can handle whatever comes my way.

Cytotoxic Sharp... that's me.

Wednesday, January 06, 2016

This too shall pass

At about 5:30 on Tuesday afternoon, I could feel my concentration lagging. My body was tired, my breathing laboured, the feeling was disappearing from the tips of my fingers and my mouth felt like I’d been chewing on Alfoil.

It felt wonderful. Why? Because I anticipated the timing with such precision and was so well aware of what my body was doing that none of it was a surprise. After all, this was day six of the latest round of cancer treatment, and so as a veteran of four cycles of chemotherapy I knew what to expect
and could face it head on.

Each day in the first part of a chemo cycle seems to have its own side-effects “signature”, with a distinctive mix of aches and pains. Given the precision in timing for the delivery of the various drugs that make up the regimen I’m receiving (R-EPOCH-DA, for those playing at home), it should be no surprise that the side-effects are quite precise as well. It’s strangely comforting to reconnect with each day on the three-weekly cycle, like an old friend you haven’t seen in a while. Perhaps it’s only comforting because I know it will soon disappear in the distance and not be seen and felt for another three weeks.

The physical symptoms are as bad as they have been for the previous three rounds, but now I know what I’m in for. In the past, when I’d feel a tingling feeling in my fingers I’d be a little panicked that it would be there long-term. Now I have the wisdom of experience to know that it will pass within a few days and I just need to be patient.

I feel like I’m doing a few rounds on the Scenic Railway rollercoaster at Luna Park. The first time you zip around the circuit is terrifying because of the extremity of the dips and the difficulty in anticipating them. But the edge comes off the second time around, because you know what’s coming. Go around enough times and you end up like the ride operator standing upright in the middle of the train looking bored.

The flipside of knowing when I’ll feel terrible is that I know have a better understanding of when I’ll feel good. For about 10 days in each three weeks I can now make plans in firm confidence that I’ll be able to fulfil them, rather than having to attach a disclaimer every time I make arrangements. It gives me a much greater sense of control over my life.

A big part of my strategy to get through cancer was to retain as much normality as possible in my life. I didn’t want to spend six months exclusively as a cancer patient, battling disease while putting everything else on hold. I wanted to go out, to work, to cook, to pull my weight around the house. These things give me a sense of purpose and meaning. For a while they were proving difficult, but now I have greater awareness of my treatment I am able to do them. I’d go mad otherwise.

Making things a little easier over recent weeks has been some medical successes that have indicated real progress. In mid-December I undertook a CT scan that showed the tumour in my mediastinum had shrunk significantly since it was first detected two months earlier. This was a huge relief and showed the chemo was working. This smaller tumour meant there was now space in my upper body to put in place a Hickman’s drug delivery line in my right chest, the conventional spot that had been ruled out earlier for me because of the tightness. So after one procedure to remove the femoral line in my lower body and another to insert one in my upper body, I am closer to being a conventional cancer patient – although less of a novelty in the ward.

This shift has seemingly brought to an end the problems that were bedevilling my early in the treatment. The distractions – from blood clots to bruises to infection scares and chest tightness – all seem to have subsided. This ability to now focus on the main game, beating the cancer itself, is a great relief.

For now, I’m laying low at home. Fatigue has set in and I can’t muster the energy to move much further than the couch. But I know it will only last a few days and then I’ll be back on my feet. This too shall pass.

After a while you know what's coming up. (Image courtesy of Luna Park)