Whenever I am connected to other lymphoma patients, I am often asked for suggestions on how to manage side effects during chemo.
By: Alyssa Burkus Rolf
Whenever I am connected to other lymphoma patients, I am often asked for suggestions on how to manage side effects during chemo. While there is a wide range of potential side effects for patients, many of the common elements relate to nausea, fatigue, and fluctuating blood counts. Nursing staff often have helpful advice, and be sure to read all of the materials on recognizing when serious symptoms (such as high fever) require emergency medical care.
Although it has been over nine years since I had multi-agent chemotherapy, I have kept a list of things I did during those six months that helped minimize some of the side effects:
Be vigilant about germs, even if people think you are being neurotic or overly cautious.
Everything you hear about being more susceptible to infection is true, and it can take longer for chemo patients to recover. Ask friends about possible illnesses before they visit, and ask them to wash their hands upon arrival to your home. Decline social engagements if anyone in attendance is sick or still recovering, even if you’re told it’s “just a sniffle”. It requires discipline and a constant vigilance, but worth the effort. You might still get sick, but the potential exposures will hopefully be reduced.
Simplify your diet, particularly on treatment day and for 3-5 days afterwards.
I found that limiting my diet on the day of treatment, and for a few days afterwards, greatly reduced my nausea. Through trial and error, I eliminated dairy, fatty meat, fried or spicy foods, sugar and excessive salt from my meals. My meal plan was often oatmeal or a poached egg for breakfast, squash soup or a chicken and avocado sandwich for lunch, and a simple pasta or rice dish for dinner. It sounds monotonous, but I found it really helped. The only problem was it was years after finishing treatment before I was ever able to eat a chicken and avocado sandwich again! I also found eating five or six small meals through the day much easier to get the caloric intake I needed , rather than tackling three large meals. If your appetite is low or non-existent, try meal-replacement smoothies (such as Ensure) to support your nutritional needs.
Avoid pre-packaged and takeout foods.
There are lots of different opinions on this, and certainly convenience foods can help when families are overwhelmed by the stress of supporting a cancer patient through treatment. These foods, from reliable vendors, can be a lifesaver, however if any mishandling of food occurs, the consequences for a cancer patient can be critical. My friend was devastated to discover that the store-bought pasta salad she served at a barbeque caused food poisoning in her guests. Most people had some uncomfortable symptoms for several days, but I ended up in the hospital with severe symptoms. She had no way of knowing this could happen, but I know now that I would avoid these kinds of foods if facing treatment again in the future.
Follow the guidelines for mouth rinses
Many cancer centres have treatment fact sheets for patients, and often recommend rinsing with warm water and baking soda after every meal and again at bedtime. This can dramatically reduce the risk of mouth sores, which can be horrible and can take ages to heal. Preventing mouth sores from occurring through mouth rinses are really worth the effort.
Try to get outside every day.
Whether going for a walk or simply sitting on a porch or bench, fresh air every day can be wonderful. I started treatment in the middle of winter, but still tried to get outside for a short walk as much as I could. Somehow the fresh air seemed to sweep out some of the chemo “brain fog” and helped me feel like a normal person again, even if I was moving slowly.
Treat yourself gently.
I have read the occasional article about athletes continuing to train through cancer treatments, or people completing marathons soon after chemo had ended. This may have been what helped heal them, but I found if I pushed too hard, the next few days were incredibly difficult. Instead, I took naps, read a lot, and went for walks (no marathons for me!).
Be ok with saying no.
We became weary of declining offers to go out but I always felt I needed to do what felt right for me. Eventually we ended up declining most invitations in advance, because it became too tough to cancel plans at the last minute. I never wanted to use cancer as an excuse for not doing something, but the reality is you just don’t feel like yourself and often have very limited energy.
It can be difficult not knowing whether the harsh treatments inflicted on your body are working. It is important to understand the potential outcomes going into treatment (Full remission? Partial response?) Once you have worked through your questions and doubts with your medical team, trust the process as you go. This isn’t about blind faith, but finding ways to balance your doubts with the belief that treatment will work. Meditation, prayer support, reiki and even visualization exercises can help give you the strength you need.
Above all else, just take it one day at a time.
This is my list – what worked for you? If you have tips and tricks that worked for you or your loved one during lymphoma treatment, please send them to me. I would like to include them in a future post. You can reach me at alyssa(at)lymphoma(dot)ca or on Twitter @alyssaburkus.