I have been on a long journey so far since my diagnosis with myeloma in 2009. Through all of my treatments and recovery from injuries, my family and friends have been at my side.

In particular, my husband Dilip has made it a top priority to help me. He is a true ‘care giver,’ not only in his work as a physician, but as my spouse and father to our two daughters. We have been married for 36 years, and the phrase from our wedding vows, ’in sickness and in health,’ came to life during this ordeal. The empathy that exists between us is very real.

I am lucky to have such a wonderful husband, and his caring qualities became more and more evident to me when I really needed help. During that time, I also learned how important communication is.

After suffering several vertebral fractures in the summer of 2009, I at first could barely move without pain. My husband fussed around me like a mother hen and looked after me at home. I never had to ask him for any­thing. He always asked me about how I felt and what he could do to help at that time.

Later, during my intensive induction therapy, he was there for me, cooking mild foods, taking me to ap­point­ments, and helping me to make sense of the disease. He tried to be sensitive to non-verbal communica­tion, since many times I was just too tired to express myself well, and was also a bit reluctant to ask for help.

That autumn, we pored over the literature available to myeloma patients and read scientific books and articles on the subject. Dilip even wrote to one of the discoverers of the proteasome inhibition system, a scientist in Israel who won a Nobel Prize for this work (we got a nice reply back).

I always have had the feeling that we were fighting this disease together, and we have dis­cussed it ex­ten­sively among ourselves.. We tried to take it as a learning opportunity, although we both have a real fear of multiple myeloma. I have to admit that I wasn’t always easy to be with at that time. I could be irritable or impatient, and also lacked energy and strength for doing everyday activities.

I realized that I had to learn how to ask for help. I would try to prioritize in my mind as to what I really needed help with, and then would ask for help on a specific task. It could be something very practical, such as not wanting to climb on a ladder to change a light bulb.

At the same time, I realized that I couldn’t expect everyone in my life to be as wrapped up in myeloma as I was, so I had to let my caregivers help me when it was convenient for them.

After several months of looking after me, Dilip was getting quite tired. During the time of my stem cell trans­plant, the almost daily drives back and forth from the cancer center were wearing him out because he also has a full-time medical practice. Although it was not too obvious to the two of us, other family members could see that we were both struggling with my health problems.

At that point, my father and step-mom started to drive me to the lengthy appointments because I was not well enough to do my own driving. They stepped right up without our asking, and we were grateful for that. Their support and kindness helped me to recover emotionally from the shock of being diagnosed with myeloma and going through treatment.

Dilip and I have both tried to minimize the impact of me having cancer on our two daughters. They were both students at the time of my diagnosis, and we wanted them to do well in their studies, and not get too wrapped up in my illness. In order to give the girls their psychological space, we kept a lot of our concerns to ourselves at that time.

Somehow this must have worked, for they both gradu­ated and now have embarked on interesting careers in health care.

All of our family, including my mother and Dilip’s and my siblings, as well as friends from near and far way, would phone frequently and visit when they could. It all helped in my recovery, I have no doubt of that. It also took some of the emotional strain away from my husband.

Looking back, I can say that the first year was definitely the worst, both in terms of me being injured and ill, and also in terms of how difficult the treatments were that I took on. But I got through it all, in no small part due to the help of my wonderful caregivers.

Thankfully, I am much better and stronger now and don’t need as much support and care anymore as in previous years. Gradually I took up doing my own driving, my own errands, and other tasks. My husband still does a lot of the cooking, though.

However, my family members still worry about me a lot and continue to act as mother hens to me. For ex­ample, they still don’t want me to lift as much as a book bag because they remember that a few years back I couldn’t lift much without risking injury.

I realize that the needs of a myeloma patient can change during the course of the disease.

I therefore think that it is really important to give regular feedback to caregivers so that they know just how much help they should offer. I wouldn’t worry about them not wanting to help; they really do want to. I also think that it’s not in any way a reflection on one’s independence to admit that you need help. Going through a cancer is a lot for anyone to cope with.

How have you communicated with your caregiver during your myeloma journey?

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The quotation for this month is an excerpt from the lyrics of the song "Forever Young” by Bob Dylan (born 1941), an American musician, singer-songwriter, artist, and writer: “May God bless and keep you always, may your wishes all come true, may you always do for others and let others do for you.”