A few days ago, I dreamt that my hair was falling out in clumps and that I had to ask someone to shave it off for me. It was a horrible panic stricken dream that I doubt I would have had before December 24th 2010 which is when I was diagnosed with multiple myeloma and my world changed.
What is multiple myeloma?
Yep, that is the first question I asked because I had never heard of it. I was in the acute renal unit being treated for acute kidney failure at the time. After a bone marrow biopsy the day before, a Consultant Haematologist, a Macmillan specialist nurse and the Haematology Registrar came to visit me on the ward and the curtains were drawn for the second time around my bed. When I heard the word Macmillan I knew that meant I had cancer and thought I was going to die soon because my experience of Macmillan nurses was that they helped patients at the end. I was told it was cancer of the bone marrow and that it wasnt curable but the discussion quickly moved on to it being treatable and the treatment options.
The consultant patted my hand and told me I was very young to be having it and tried to be comforting. I think I asked the classic “how long I have I got” question and am a bit hazy about the answer but recall 12 months being mentioned
Myeloma is a cancer that affects cells in the bone marrow called plasma cells. As the cancerous plasma cells fill the bone marrow, you are not able to make enough normal blood cells. This can lead to anaemia, bleeding problems and infections. Other symptoms include bone pain, fractures due to bone damage, and kidney damage. In many cases, treatment with chemotherapy and other treatments can control the disease, ease symptoms and prolong survival for a number of years.
And so that is how the nightmare began and I was forced to join a world that was previously unknown to me, my family and friends. A society which revolves around treatment, side effects, blood tests, chemotherapy, endless visits to hospital, sickness, hair loss, and bags of medication. And a new language to learn……………
myeloma light chains refractory disease
relapse remission very good partial response
stem cell transplant risk of mortality
kidney function platelets para proteins
Just to mention a few
So going back to the bad dream I had last night, this dream came true although my hair didnt just suddenly fall out in clumps, it was a gradual process which started with thinning whilst on my initial treatment (caused by the chemotherapy element of the treatment), then the high dose chemotherapy I received prior to my stem cell transplant on 1 September 2011. I had my hair cut short prior to my transplant by a lovely woman hairdresser in Olhao in Portugal. She couldnt understand english and I couldnt speak any portugese but I said the word cancer and gestured to my head and she then understood what I wanted, and afterwards kindly said I looked beautiful and that she would pray for me! I got a crew cut and it looked good and stopped my hair from clogging up the sink and the shower.
Judge for yourself whether I looked beautiful!!
Then when I got home from hospital after the stem cell transplant the crew cut was looking decidly more patchy so I asked my mum who was staying with me to shave it all off with the clippers a friend had bought me for this purpose.
I felt emotional but I had been preparing for it and to finally get it done was a relief. It took a long time as my Mum didnt want to cut my head (as my platelets were low and it might never stop bleeding!) I was pleased to find out that I have quite a nice shaped head although a little lumpy in places.
Having no hair almost felt like not wearing any clothes. I felt stripped bare for all to see and was conscious of how much our hair and hair style can give you an image and a cover that when you dont have any leaves you feeling exposed to the world and seen as a cancer sufferer I guess.
Now it is growing back again and at the crew cut stage and to my delight is slightly wavy. I was told that my hair might grow back maybe a different colour or curly and as I have dead straight hair was rather hoping for the latter and yes a slight wave can be detected! Cant wait to see what it might look like when it grows a bit more.
So having the dream a few days ago several months after it actually happened is a reminder to me of how significant the experience of hair loss has been for me and in some ways is the defining image of a person with cancer. At some level there is a part of me that refuses to accept that I have cancer and can no longer have the life I had before cancer. My challenge now is to learn to live a new way.