Tips During Treatment

Before I was diagnosed last year, I knew very little about the practical aspects of cancer. I had seen a few acquaintances afflicted by different forms of the disease, but somehow their experience had always been at a distance from me. Probably I was not curious or empathetic enough, but I sense also that people tended not to talk about their experience very easily.

 

Now I am in the heart of a treatment program. I always knew that cancer came in many forms and followed many paths. I may be unusual in being rather functional during treatment, but I don’t know that really. I don’t even have much idea how my own cancer is likely to develop, but I certainly have picked up a few tips that seem to work for me, and which could also be helpful to carers.

 

I am more than halfway through an intense six-week course of oral chemotherapy and radiation therapy. The chemotherapy is a nightly pill, and it seems very general and untargeted, probably because anything else for the brain may not be feasible. The radiotherapy involves a daily trip to a facility and is surely very targeted. The facility has rooms dedicated to different types of cancer. I lie on a slab and both the slab and the machine above it can be rotated so that the radiation is applied as precisely as possible. I also wear a personalised mask, more like a cage, that was made for me when this started. It is tight and I can imagine is a problem for anyone with claustrophobia, but I have no real trouble with lying still for extended periods.

 

My clinic appointments tend to be early in the morning. I grab a cup of tea and something quick like a banana or a yoghurt, take my morning medication and get out of the door like a commuter. I will usually have a little nausea on my commute, but nothing too unpleasant. I walk for five minutes to the subway, then take the F train for four express stops to 63^rd and Lex in Manhattan, then walk two avenues and four streets to the MSK facility.

 

My only persistent symptom so far is a serious loss of peripheral vision on my left side. The operation to remove the tumour just before Christmas made this a lot worse (I am not complaining, it was a fair trade). It has just started to show a bit of improvement, with double vision largely absent now, but the symptom is hugely frustrating, even though by now I can get around without bumping into two many people or objects or speeding cars. I can also read, which helps pass the time in waiting rooms. Luckily this is not usually too long, as all medical facilities tend to run closer to schedule early in the morning.

 

On Fridays I hang around to have blood taken at their lab, and on Tuesdays I meet the lead radiation doctor and his nurse so they can check how things are going, give me tips and sometimes alter the medication regime. Every three weeks I meet the doctor and nurse leading my overall treatment, and my therapy appointment is also every three weeks. Occasionally I have additional appointments for scans like an MRI. Otherwise the rest of the day is my own.

 

I have other pills to take during the day, and then I finish the day with an anti-nausea pill followed by the oral chemo pill just before sleeping, both of which work better on an empty stomach. One tip I can pass on is to ask the nurses about the best time of day to take all the medication. Sometimes a time is mandated and will appear on the pill bottle, but it seems that almost all pills have some side-effect risks and these are minimised by choosing a particular time of day, and the nurses have lots of experience to help if I remember to ask.

 

It is common that one pill is prescribed mainly to counter the ill-effects of another pill, and this is another area worthy of discussion with medical staff. They will often prescribe steroids, and in some situations these are essential, but all my MSK team know by now that I tend to react strongly to steroids and share my wish to avoid them if we can. But the trade-off may be some further temporary worsening of the eyesight, or more fatigue and nausea. Another trade-off for me is between anti-nausea pills and stool softeners, and I am currently in a mindset to put up with the nausea to avoid too much constipation. 

 

So far nausea has been my main problem. It tends to rise during the afternoons, and it depends on the medication for each day and other random factors. I suspect it is a bit like being pregnant, though I have managed to avoid any vomiting so far. I have reverse food cravings, in that stuff I normally love, notably rich and sweet foods, make me feel sick just to contemplate. So I restrict myself mainly to simpler foods such as starches with some meat and fruits. I don’t fully understand the reason, but while on radiation I have to avoid many foods that normally I would consider very healthy, such as vitamin supplements or blueberries.

 

I think I have found something of an antidote to nausea, and that is to eat. It feels counter-intuitive, because I don’t taste well and my mind tells me that if I eat then I will probably soon vomit, but I have learned that, at least for me, I can keep stuff down and that eating enough reduces the nausea.

 

In a similar way, another antidote to both nausea and lethargy is activity. If I can distract myself by doing stuff then I am les likely just to sit around and feel sorry for myself and allow the nausea to grow and the sleepiness to progress beyond occasional healthy naps. While I am doing something else, something even as mundane as the washing and ironing, then I don’t have time to feel too nauseous. I guess this would not work for everyone, and activity has to be balanced against risks of falls or seizures and other serious complications, but I am certainly finding it helpful to push myself a bit. I have choir rehearsals three weeknights per week, two of them in Manhattan, and the doctor has allowed me to start swimming again. I usually have an activity to look forward to do, and that also avoids the problem of dragging days and helps the impression of approaching the finish line of the treatment.

 

For me, independence is also a benefit, because that supports more activity and gives me confidence that I can do more, and safely. There is a trade-off here with the doctors and nurses, who are understandably risk-averse, but also with my wife. I have willingly allowed my wife to put a tracker in my wallet and to agree to send texts every time I reach the end of a journey, as a fair cost of the independence she allows and I value. 

 

Another tip is to prepare for the sessions with doctors and nurses. There are only so many scans they can afford and live tests they can carry out, so they must rely on my self-assessment, especially for things like the eyesight impediment. Last week I did not really prepare for a session, and it was a frustrating day for my vision, so I reported a deterioration, which I was lucky did not land me on steroids. I made a point of more rigorous self-assessment of the next couple of days and was able to conclude that the double vision had stopped and to pass this good news on to the nurse.

 

A last tip is to try hard to care for my carers, especially my wife. It is too easy to fall into a self-pitying mindset, and a good carer will willingly concur that this is all about me. But it isn’t; in many ways it is just as hard for her. The wallet tracker is an example of something that is easy to concede, but there are other areas too. I don’t fancy food so going to a restaurant does not currently have much appeal to me, but I should try to think about her desires as well.  It all helps her to help me, and tends to reduce my nausea as well.

 

I won’t pretend that my treatment is any fun, but as usual it is not hard to find reasons to be thankful. I am lucky that the treatment has an end date to count down towards. I am able to hold down my food and my medication. The daily misery on the slab is over in twenty minutes, and I can imagine plenty of Bach or other music to help the time seem to go faster. I am able to be independent and to stay active. I have the best medical care and the best care at home. The gospels from the last three Sundays have been relevant and inspiring. Thankfulness is always a great antidote.