Northern Lights: Communicating With Caregivers
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.”
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
Very meaningful. My wife of 43 years has been awesome, but it is draining on her stress level. I often get her half-day gifts at a local spa. Stay strong and Happy Hearts Day.
Thanks Gil! Happy hearts day to you and your wife also!
My journey with my caregiver, my wife, has been a bit different, yet the same. She was diagnosed with lymphoma first and she needed no help from me. She flew through treatment like it was nothing and reached complete remission. Then by the time I got my diagnosis, I was in so much pain there were times I couldn't roll over in bed. She was there for me every step of the way. She stayed with me in the hospital the entire time I was admitted for my transplant. She's just been amazing.
Next thing we knew, after I had reached CR, she was re-diagnosed with another form of lymphoma. She beat that one down as well, all the while showing no signs of any side effects from treatment and cruising along rarely needing any help from me.
That brings us to today. Although I have no stamina anymore, my strength has really gone down hill and deal with the Revlimid cramps in my feet, I am doing very well. Nothing I can't handle, yet she still looks after me. Low and behold, today, we got word that her lymphoma has returned and we need to make some treatment decisions for this third round.
I say all of that to say this. She was an awesome caregiver when I was at my absolute worst. She is a very strong woman that would put most men to shame. I am a lucky guy to have her on my side, especially when the chips are down.
I can see from your article that you are in the same position with your husband. He must be one heck of a guy! We are lucky indeed, you and I. Folks, never, EVER take your caregiver(s) for granted. They are very special people indeed.
Thanks for sharing Nancy!
Thanks to you for sharing also, Scott. I wish you and your wife all the best with your health issues. These episodes with severe pain from fractures is unforgettable for those of us who have had that problem. I don't know how I could have managed without Dilip ...he is a wonderful guy! Maybe that is why as myeloma patients we tend to be a quite cohesive patient group also. Having gone through experiences like that, we really want to make it better for the future!
Thanks for the encouraging article. My wife is a registered nurse and she has been a real trooper helping me with everything. I am extremely lucky to have caught my disease early, because I am still able to do everything physically as before. But, the emotional support, the health decisions I needed to make we could discuss, the patient care she gives to me, has been a God send. Hopefully, I can get into clinical remission, but I have a ASCT to get through first. I'm sure she will counted on a lot by me during that critical time. I'm blessed to have her as my wife and my caregiver as well.
Hi Randy, Good luck to you on your upcoming treatments! It's wonderful that you have such a well educated spouse. I think that that will help you both out a lot. Also nice that you caught the disease earlier than some of us. That is a real plus in terms of recovery time, I would think.
It's a nice community of sharing folks here and everyone will be willing to help out at the forum if you or your wife have any questions as you go along.
Hi Nancy,
Our caregivers are such special people. I would hate to have had to go through this journey without the support of my husband, friends & family. They are awesome.
BTW I saw an echidna last week walking in the neighbours backyard - we dont see them that often.
Take care,
Libby
Thanks Libby. Caregivers are awesome, and I don't really know how I could ever repay them for all that they have helped me with! I get quite overwhelmed when I think of it actually.
How neat to see an echidna in your garden. It just sounds so Australian! We saw echidnas in the Featherdale Wildlife Park in Sydney. They look quite a bit like hedgehogs don't they? We don't have hedgehogs here either though. Are they marsupials?
What I did see last week was a juvenile sharp shinned hawk, sitting on a birch tree in my garden. I just glanced up and thought it might be an early robin, but it was larger than that. Dilip started clicking photos and a friend forwarded them to a source who ID's birds, and it came back to be a sharp shinned hawk! I don't recall ever seeing one before. They are among the smallest of hawks, fly very quickly and hunt mice and small birds. We are going to put a little blurb in our community newsletter about that. I put a bobcat picture in the newsletter last year and got some comments on it from neighbours! I haven't seen the bobcat since, and yet it was right in our yard and we got photos of it. I find with wildlife sightings that they happen when you least expect them.
Nancy, thank you so much for your post. I am the caregiver for my husband, who has recently been diagnosed, after us going through a few months of wondering what the heck was wrong! He also had suffered several compression fractures, and it was as a result of additional blood work prior to his vertebroplasty, that he was sent in for additional testing. There were 2-3 months where I was helping him in and out of a chair, took us about 20 minutes to get him out of bed in the morning - I was begging for help from the doctors and, I don't know, it just seemed like his case kept falling through the cracks. Your post is very inspiring to me, as it gives me hope - now that he has started treatment for MM, that he will start to regain his strength. He went from a vibrant, strong, in-shape 71 year old to an invalid in less than 2 months. Unbelievable! He used to work out religiously 3 times a week with weights, did all of the cooking, shopping, yard work, etc.
I was the spoiled "princess" on the home front - hadn't been to a grocery store more than twice in 10 years - however, I am a very busy realtor who loved her work -- now I have had to "learn" how to cook, shop, do everything, and I love every minute of taking care of my man. He's so precious to me, that I don''t even want to leave him for a minute. The first 3 months, I really didn't feel he was safe if I left him alone for more than an hour or two. Now, he is improving to the point that I know he can get to safety, if need be - so I can get back to work a few hours a day.
What has inspired me the most is knowing that you were diagnosed in 2009, and that your life has returned to a bit of normalcy. Thank you for sharing your story - I will read more - and I really appreciate reading so many of the life stories in the Beacon. I wish you and every MM diagnosee the very best of success in fighting this disease. I am a 10-year breast cancer survivor - and that was a piece of cake (even though I lost a body part or two) to what you all are going through! God Bless you, and keep the faith!
Thanks Mary for sharing your journey so far with your husband. I can surely relate to the problems your husband has had, and hope that he is getting treatments that are helping him now to put the myeloma into remission or at least a stable, low level. I had about 20 months of treatment altogether, including the induction chemo, the bisphonate treatments for bone strengthening (which actually went on for about 3 years), and auto stem cell transplant, and then a year of low dose revlimid after that. It seemed like a long ordeal, but I did get better little by little. Now I am quite fine in most ways again...a little the worse for wear, but certainly can't complain. Having my dear husband and my other family and friends pulled me through it all.
I hope that you are comfortable with the care that he is getting, and are working with a myeloma specialist.
Yes, isn't the Beacon a great resource...I discovered it through posts sent out from my local support group, including columns by Sean Murray and Pat Killingsworth. I gradually realized that I could read the Beacon on my own, online. I am honoured to be included as a writer here now, and am working with a wonderful editor, Maike Haehle, who tries to keep me on track!
Hope all goes better with you both for the future, and that your health is good too. what you went through isn't easy either, as I know from talking with friends who had the same diagnosis. Best wishes!
Thank you, Nancy - I appreciate it! I will continue to follow other posts here in the Beacon - and best wishes to you and your family too!