Living For Lamingtons: Hair And Hats
In my pre-myeloma days, I didn't think much about hair or hats. I was surprised to find out how much this changed in the months during and after my stem cell transplant.
My previously bushy hair had become pretty thin before the transplant due to the treatment with cyclophosphamide (Cytoxan), which I was given to ‘encourage’ the stem cells to leave the marrow so they could be collected from my blood.
Perhaps, given this hair thinning, I ought to have been prepared for the next phase. However, I don't think I had really worked out what it would be like to have no hair.
At the time leading up to the transplant, I think I felt that, in the big scheme of things, losing my hair was not particularly important. There were so many other medically scary things ahead that I was busy trying to find the strength to cope with.
So the transplant procedures began, and lots of fairly unpleasant things happened. The melphalan (Alkeran) did its work, and like so many of the Myeloma Beacon's readers and writers, I felt pretty sick all the time – so much so that simple things such as having a drink of water became a major task.
And my hair fell out. First in handfuls, then in chunks. It was horrible. I didn't tell anyone or talk about what was happening. I just tried not to let anyone see my hairless head! At times this was a bit difficult to achieve, as hospitals, I discovered, don't really go in for privacy. To be fair, I was very wobbly on my feet, and the nurses didn't want me to shower or go to the bathroom by myself.
I had prepared for this time physically if not mentally. I had bought various sorts of headgear that I started to wear. I had found small, very simple pull-on cotton hats of different colors, and I wore these at night. In the morning, I changed to colorful batik scarves that had a tie at the back. I tried to color coordinate these with my pyjamas! Just writing about this makes me feel pretty crazy.
I remember very carefully switching between my nighttime and daytime hats when there was nobody about. I never let the doctor, day nurses, or indeed my husband see me in the nighttime hats. I hadn't planned to behave in this way, it just sort of evolved. The nurses in the ward often commented on my headgear, just saying things such as, “Oh, you suit that green color!”
Once I was able to get out of bed, wear regular clothes, and walk about a bit, I changed my headgear to caps, again of different colors and designs. Once I was well enough to leave the hospital, I wore one of these caps to travel home. I changed back to the scarves inside our apartment. I kept the nighttime hats under my pillow, changing into them only once I was in bed.
The final stage in the hat story were proper, regular hats, which I wore when I went to the hospital for check ups and when I finally started going out and about a little.
I am not a psychologist, so I don’t really know why I behaved in this way. I think I was aiming to preserve my dignity and simply just trying to look as normal as possible in the somewhat odd circumstances.
Once I started to recover more from the transplant, other ‘hair and hat’ issues emerged. A friend from the UK had come over to Singapore to visit me for a while. Before she went home, she wanted to buy some pashminas. We went to a shop together, but I stayed outside as I was still very frightened of being near people who might harbor infections.
I was standing outside the shop wearing a hat and feeling that I looked okay. A complete stranger came up to me, however, and said, “Do you have very short hair or do you have cancer?” I was totally shocked by this question and, as far as I can remember, I mumbled an answer, saying that I had cancer. The stranger then told me about a support group for cancer sufferers in Singapore and advised me strongly to join the group. I shuffled off desperately trying to get away from the person.
Looking back, I still find the incident very strange, and I think it made me even more determined to try to hide my hairless state. I had bought a wig as well as the hats before my transplant, so I started to wear the wig in public, even though it was extremely uncomfortable in the heat and humidity of Singapore.
I found going into the hospital clinic was the easiest place to cope with hair and hat issues. I chatted about hats with some of the other ladies, and we exchanged compliments on our appearances. The nurses in the clinic didn’t make a lot of comments, but they obviously took note of some of the chat. One nurse presented me with a lovely box one day. Inside the box was a most beautiful hat that I wore with pride on many of my visits to the clinic.
Eventually my hair grew back, and the scarves and hats could be abandoned, but definitely not forgotten.
Exactly one year after my stem cell transplant, I returned to the hospital ward to share a birthday cake and a bit of a party with the nurses. It was a lovely event, and it revealed one final very memorable view on hair and hats. A few of the nurses were reflecting on my time in the ward, and they mentioned my scarves and hats.
It was very clear that they liked the fact that I had worn the various pieces of headgear. They said that I had remained ‘pretty,’ and that had made them feel nice.
It was as if they appreciated the effort I was making.
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of hercolumns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I enjoyed reading your story. When I had my stem cell transplant in March 2006 (coming up on 11 years ago), I shaved my head when I started losing hair. In solidarity, my husband shaved his head too. I bought 2 wigs that matched my hair color and, honestly, no one knew the difference. Of course, I didn't tell most people, so they wouldn't really know. But my hair came back very curly and still has a lot of wave even after this long. It also grew quite long and, for someone whose hair never grew past my shoulders, that was quite something.
I can so relate to your story, Marjorie. I find losing your hair, as a woman, is a rather traumatic experience.
Thanks for your column, Marjorie.
It is very interesting to see how differently people react to the hair loss that can happen during treatment, and to think about why there are such differences.
I suspect whether you are female or male plays a role. Many men with multiple myeloma have experienced hair loss, sometimes substantial hair loss, prior to their diagnosis. So for them, the issue is nothing new.
Your column also points to other factors that can matter: How serious the disease was when it was diagnosed, and how difficult it has been to treat. If the disease was causing a lot of damage at diagnosis, or if it's been difficult to treat, a patient has had a lot of other things on their mind by the time they have to deal with hair loss. So, when the hair loss finally happens, people may be less emotionally prepared, simply because they haven't given it much thought.
I think some of this may have happened in your case, which is why your account was so intriguing.
I look forward to reading more about your multiple myeloma journey. Thank you!
Thanks for your column, Marjorie. I didn't like losing my hair either, and resorted to scarves, terry towel turbans, and a wig. It was so cold here during the winter when I had no hair, that the wig provided warmth, like a hat. People gave me odd looks when I went outdoors walking with just a wig on my head, instead of a warm knitted hat! Even when my hair started to grow back in, I was reluctant to give up the wig. But I did eventually do that, and liked the short, wavy hair I had initially when it grew back in. My favourite Beatles song is 'When I'm 64', because of the line 'When I get older, losing my hair, many years from now....'. Keep writing, you have an interesting perspective on all of this!
Majorie,
Thanks for sharing your story. It truly is amazing the things we hold on too in order to have some sense of normalcy and dignity. I did many of the same things as you, but also took to wearing some of the funny hats with animal ears, faces, etc. Especially in the northeast in cold winter, it was incredible how much heat you lost from no hair!
It never ceases to amaze me that strangers, sometimes acquaintances and friends, burst out with odd remarks like this person boldly asking you if you are a cancer patient. I continue to believe they think they are helping, but it is weird!
Whatever continues to make us feel somewhat like the person we used to be is important!
Dear Christina - You were brave to shave your head. Maybe it helped that your husband joined you! My hair also came back curly and much darker than my old hair, but no complaints when you have had no hair. It's lovely to hear that it's almost 11 years since your transplant. Happy birthday for next month. Marjorie
Hi Melanie - Thanks for your comment. I hope your hair has grown back now. Every best wish, Marjorie
Dear JimNY - Thank-you for your good wishes and comments. I think you are correct that the way we react to hair loss depends on many factors. As you suggest, in my case, I was extremely ill on diagnosis and I was struggling with many medical matters leading up to the transplant. I will try to continue to unravel my journey in the months ahead. Thanks again, Marjorie
Dear Nancy - I also love the Beatles song, but had never imagined relating to it in the way we both do now. I like the picture in my mind of you out in the freezing cold wearing your wig with no hat! Many thanks for your encouraging comments. Best wishes to you, Marjorie
Hi Jeanine - Thanks for your comments. I know the funny hats which you are describing, I wonder what people thought when they saw you and I hope they helped you to feel okay. I'm sure you are correct about people trying to be helpful but, as you say, it's pretty weird when these comments come our way. Good luck to you and best wishes, Marjorie
When I was told I was going to be doing chemo, my doctor made the comment that I would not be losing my hair. I took Velcade. I thought the comment was interesting. When I had my stem cell transplant, I knew I would loose my hair. The nurse came in and asked if I wanted my head shaved as some other patients did. I told her no I wanted to see how much I lost. I had a thin hair section at the base of my neck. My hair came back in the same color but wavy.
Wigs…I remember that the first thing I was doing upon entering my apartment was to throw my wig somewhere and sigh from relief. It was winter, and when I went out, I wore the wig and a cute cloth hat. I would look younger with that thick hair with no grey or white. But I detested it!
When I was in hospital for the transplant, I just wanted to go through it. I knew that my hair would fall out and that it was part of the price to pay to hopefully make my life longer, but I could only accept it and tried to be rational about it: it will grow again, it is only temporary. I was so sick with my stomach that losing my hair was secondary.
When I arrived at home, I looked at myself in the mirror. Very thin, 47 kilos, no muscles, no hair. I said to myself: “I want three things: my hair, some fat on my limbs, and some muscles for when I go swimming again.” It took several months to obtain everything; 6 months for getting rid of the wig, as soon as the hair covered my skull. Until then, I obsessively looked at my head every day, and thought that the process of hair growth was exasperatingly slow.
When it grew again, it was curly - I liked it! It took a year for it to become straight again. Anyway, there has been a pleasant side to this story: no white or grey hair for two years! It is as if my new hair was younger - how strange, but how nice!
Thank you Maureen for a very heartwarming story. I believe your story will inspire others to do the same.
Dear Joyce, Yes it is strange the way different cancer treatments are classified. I am very glad that your hair returned and was the same colour, I hope you liked the waves as well. Very best wishes to you.
Hi Annamaria, I am glad that something positive came out of such a horrible time - I guess your hair really is younger. Like you I found it hard to believe how slowly my hair grew back in but we have both learned to appreciate hair in a whole new way! Long may it continue, good luck to you.
Dear Patty, thanks for your kind comment - I hope my stories are useful to the Beacon readers. Best wishes.
Dear Marjorie,
I always enjoy reading your articles because you present a fresh look at familiar topics, like losing your hair. I appreciate how you held onto your privacy, dignity, and even style with scarves, hats, and wigs. My journey, similar to many others, began with the induction therapy for the stem cell transplant. My two sons shaved my head. This was frightening and hilarious. They felt so helpless, and this gave them a task. I gravitated to hats – lots of hats – and than scarves. Wigs itch and never fit me.
Actually the worst was when I lost eyebrows and eyelashes. I thought I looked like an alien. I remember staring at everyone's eyebrows with great envy.
I do remember the questions from other strangers, but for me it was a way I entered a community of fighters, cancer warriors, and those with hair grown back, cancer survivors. I also respect your need for privacy during a traumatic period.
Thanks again for your sharing.
Thanks Maureen; yes, no eyebrows was also horrible. Mine came in black and looked very odd, but they have since reverted to a fair colour. I can just about imagine the head shaving exercise; it's great that you could find that funny! It's good to write for the Beacon and I am glad you enjoy my articles. I find it a great source of information and comfort. Very best wishes to you.
I really enjoyed your story. I haven't lost any of my hair yet, but I will have a stem cell transplant within the next month, so I will be going through that then. I have been looking at hats and scarves but have not bought anything yet. I guess I need too. I say I am not going to have a problem with losing my hair, but in reality I know I will.
Dear Barbara, I wish you all the luck in the world with the transplant. I guess you will be right and losing your hair will upset you. I hope the scarfs and hats make it all a little more bearable. I know it will seem a long way off but the 'new hair' seems like a treat and I hope you don't have to wait too long for it to grow. Every best wish, I will be thinking about you.
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