Coping Strategies

I realise now that I have nearly a year of experience of living with a health crisis. I have made many mistakes but also learned a few lessons. Perhaps some of these can be useful to others, even if every situation is different.

 

My first learning point is to choose your team and to set the crisis up as a sort of project. It is a strange project because it starts in an instant and has a variable end point. One of the tough tasks of the team is to constantly be working towards the best available closure for the project, given that closure can occur suddenly.

 

The team is much easier to form and much more likely to be helpful if it can be anchored by a loving life partner. Wow, that is a powerful thing to have in these circumstances. But I have to try to remember that my life partner has her own goals for this project, and indeed the project will close for her later than it will close for me. This is not all about me! Last month a friend quoted an interview with a retiring oncologist, whose top learning point was to note that he was treating the partner as well as the patient. Bravo: if only more medical professionals could have the maturity to see this.

 

I set up my core team in the frenzy of the early days, facing a biopsy procedure that I feared might be fatal. As with all project teams, there need to be goals, and clear roles which play to strengths of team members. The team process has evolved over time, but we have made each other stronger and more effective by working together. Having team members dial into my consultations has been especially helpful.

 

My next learning point is to try hard to manage incoming communication. Medical professionals are invariably impressive clinically, but the quality of their communication varies wildly. We have experienced some excellent communication, but also insensitivity, inappropriate messages and even mistakes. I have learned that if I simply let things happen I often end up confused and more upset than I need to be.

 

In the early stages there are surely many messengers, often under a lot of time pressure. One immediate trick is to use the team by having them dial in. But as the crisis develops, it is possible to build relationships with some of the experts and to help them craft their communications in ways that suit me. By now our lead oncologist knows what I want to hear and how, and what works for my wife. We have been lucky enough to reach the same level of trust with some others. As a general rule the experienced nurses are fantastic, the senior doctors are variable and the interns are frequently terrible communicators.

 

A third lesson I to put effort into understanding my medications. The treatments and scans are all a bit of a mystery to me and that suits me fine, but when it comes to meds I can make a difference. They all have their purpose, but many high side effects and those effects are different for each patient, so it is hard for the doctors and nurses to prescribe pills that work best for me.

 

In my case, this was most obvious with the steroids. I ended up taking various doses of steroids during October, November and December last year, and it took us a while to work out that they were the culprit when it came to personality side-effects. Steroids play an important role in treatment, reducing swelling and even preventing catastrophic setbacks, but in my case they also made me rather aggressive, over-active and judging. I was wide awake soon after 5am each morning and anxious to get on with many projects. I was grateful for the 5am kick-off games during the soccer world cup – they provided plenty of distraction and prevented me from doing even more dumb things while amped up.

 

Luckily I was able to build trustful relationships with specific nurses and doctors and we could start to talk through the trade-offs involved with medication choices. They support my general principal of minimising the medications I take, and are happy to work with me so that the overall effect is as positive as it can be. 

 

There is no escape from the main oral chemotherapy pill, since that is the one which can kill the cancer cells. Its job is to hang around my body as long as it can and to destroy anything it finds that it does not like. With all that poison in my body all the time, it is no wonder that the pill causes side-effects. It is great that over time I have been able to work with my doctors and nurses to keep these under control.

 

A related lesson is to work out myself how to minimise side-effects. This will surely be different for everyone, which means there are few general rules and it is not enough to rely on the medical professionals.

 

Nausea has been my main problem ever since I started on the radiotherapy and chemotherapy. I have anti-nausea pills up my sleeve, but I try not to rely on them, especially since they have their own side-effects. For me, the best solution for nausea is to eat. It is counter intuitive, because the nausea can kill my appetite and make some foods very unattractive to me, but I find that if I force myself to eat (as well as to stay hydrated), then it passes more quickly. Usually I find simple starchy foods do the trick, as well as some fruits, notably apples. I also find I am fatigued, but I tend to simply embrace that, sometimes taking three or four short naps in a day. I am lucky in that I seem to be able to sleep anywhere and at any time, yet I wake up before the nap destroys my ability to sleep overnight.

 

Now I have the dizziness as well, on and off, and that was very scary when it first emerged. It has not been a problem lately, and I already have a pill for the next time I have an issue, and I am optimistic that the physical therapist can do something for me after a consultation next week. I quickly found that a way to control the dizziness is to breathe deeply and actively.

 

Knowing my medications and developing my own coping strategies seems to help with the physical challenges, but the emotional ones are something else entirely. Having a strong team is even more critical when it comes to emotions. The best decision I made with my team was right at the beginning when we resolved not to be angry or bitter. We have been able to face the other stages of grief without having the anger boomerang attacking us.

 

We also resolved early on to avoid secrets and to communicate widely and openly. I think this has turned out to be a good idea too, though I recognise it is not for everyone. And for sure in the early days we were guilty of over sharing, another legacy of those cursed steroids.

 

Extensive and open communication has also yielded dividends for us within the team, and especially within the marriage. These emotions are hard enough to face as it is, so the more we can help each other from a strong base of understanding, the better we can manage. Our time horizon is still fluctuating wildly, but at least we can talk about that and its implications, and slowly navigate our way towards a direction that can help us both.

 

So that is many lessons, and no doubt there will be many more to come. And did I mention thankfulness? That is the magic medicine that makes everything better.