Living For Lamingtons: Myeloma Days
I find that some days, while I don't exactly forget about multiple myeloma, I can focus on other aspects of life and feel a bit myeloma-free.
Yesterday was not one of those days.
My husband Graham and I have recently moved back home to Scotland from Singapore, where we had been living for the past two years. As I've mentioned in previous columns, so far all my myeloma treatment has been under the care of a great team in Singapore. Without wishing to sound overly dramatic, this team brought me back from the brink. I felt incredibly secure about all aspects of my treatment and had developed close relationships with many of the staff. Leaving was tough. I had an emotional farewell at the clinic and was very touched to receive gifts and letters wishing me good luck.
Returning to Scotland, trying to fit into the health service, and finding a doctor with an interest in multiple myeloma was going to be rather daunting. However, with the help of a friend, I found such a doctor.
Yesterday I had the first visit to a new clinic. I was extremely apprehensive about the appointment and felt a bit of a gibbering wreck!
Walking into the hospital seemed so strange and unfamiliar and really quite frightening. We found the hematology area, and I saw the treatment rooms where treatment infusions take place. Suddenly the surrounding became more familiar, with the same safety signs and medical information leaflets on the walls. I might have crossed continents, but with a glance into the treatment area, I could immediately empathize with the unfortunate patients who were undergoing some type of infusion!
I then met the myeloma specialist, and the process began. Obviously, I had to explain all about my diagnosis and treatment so far. We talked for over an hour about the symptoms, diagnosis, induction treatment, stem cell transplant, recovery, and maintenance therapy. There were blood tests, examinations, drug reviews, revised treatment plans, and many, many questions.
I was slightly hazy with details a few times, but luckily my husband could fill in the spaces.
The doctor couldn't have been nicer, nor could the nurse who took my blood pressure, which predictably had gone from its normal 110/70 to 155/92!
I felt my illness through and through. I was every inch a multiple myeloma patient. There was no escape, no chat about the other parts of Marjorie, no relief from the reality of this cancer.
We left the hospital and drove back home, still deeply in myeloma world. We had phone calls from family who had been concerned about the appointment. Everyone was reassured that the appointment had gone well and that I would be looked after well.
I struggled to work out why I felt so grim despite the day having really gone so well. I felt fortunate to have found another great doctor and a clinic where I will be well cared for. However, I also felt very deeply sad inside. I think it was because I had to face up to this disease again, I had to tell my story, and I had to listen to the doctor discuss the likely relapse.
I had to endure a real myeloma day.
I believe at some level I had felt that, as I left Singapore, I had left multiple myeloma behind. Back in Scotland I feel more 'normal,' and yet I brought my myeloma with me. She will be my life companion, and I would rather she had stayed in Singapore!
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 her columns here.
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Dear Marjorie, You really captured with this column how stressful it can be when you have a "myeloma day." Like you, at some level I forget that this disease is our "life companion." Interesting that your multiple myeloma is a she. This was wonderful writing.
I have thought about the possibility of moving at some point and having to leave my wonderful doctor here and going to someone else. It's actually frightening, and you captured that here so well in your article. Thanks so much for sharing, and I wish you well with your new medical team...as well as great health that defies the odds.
Marjorie,
You are such a good writer. My husband was diagnosed in Seattle just months before he was planning to retire. Our plan was to move to Arizona. Instead we chose to stay in Seattle for treatment. It's been 5 months since his stem cell transplant and we are finally going to make the move. It is a little scary to switch to a new oncologist in a new place. We know how you feel and you expressed it so well.
It is painful to have an overall view at what we are going through. The first time I went back to my beloved swimming pool after the induction, five years ago, instead of feeling happy to do something enjoyable again, I was hit by the awareness that my life had changed for good, and that a grey zone of fear and worry would occupy my brain all the time. During the last five years I relaxed three times for about half an hour. Oh, I wish it happened more often, now that I am in remission.
There was another time when I got depressed for three days. It was when I attended a multiple myeloma symposium in Rome. There were many myeloma specialists and patients there, including some patients with orthopedic supports. A specialist at one point showed some slides with the progression of the disease in the body. Brr. During the intermission I talked with other patients and mostly heard sad stories.
I decided that I would never go to another conference of this kind. But now, I have changed my mind, and soon I will attend another one, not because I am masochist, but because one section is dedicated to the new medicines, and that is the only section I will attend, after which I will grab a cookie and a cup of coffee at the site, a posh hotel ... and go swimming!
Dear Maureen - many thanks for your comments. I wish you can have many non-myeloma days! I am not sure why my myeloma is a 'she' but somehow that seems to be where it fits.
Hi Susan, thank you for your good wishes. I am glad that you have a great doctor and hope that, if you do have to move, you find another one. Actually I have the feeling that doctors who deal with myeloma are generally interested in the condition and the person so perhaps it need not be quite as frightening as we both fear.
Dear Judy, I really do wish you and your husband good luck with your move and with your husband's recovery from the transplant. I guess it will be tough for you both. I have many images of Arizona in my mind and I hope it is as warm and beautiful as I imagine.
Hello Annamaria, I can identify so well with your return to the swimming pool. As much as I would like not to have these feelings, when I return to pre-myeloma activities, they haunt me. I hope that you find the conference useful and enjoy the cookies (pity you will not get Lamingtons!) and the swimming!
Thank you for a very good article about the stress in moving to a new place and finding a new doctor. This is definitely not easy and takes courage. But, you also wrote about the quality care you found in Scotland. On a personal note, I'm in a good situation now with Velcade maintenance after an autologous stem cell transplant more than three years ago; however, I realize change such as a new drug treatment plan is probably "down the line" for me. I will remember your words of hope. Thank you, Marjorie. All the best to you - every day!
Dear Sylvia, thanks for your comment and your good wishes. I take your point about what might happen 'down the line' and hope that will be far off for you. Good luck and best wishes Sylvia.
Marjorie, what a well-written column! While I am not the patient in our household, as my husband's caregiver, I empathized every step of that grueling day with you. "Myeloma days" are the heaviest and the most exhausting to bear - emotionally, physically, mentally - they really take their toll on everyone...patient and caregiver alike.
Change is hard, and the unknown is even harder - but what a wonderful thing that your new doctor and nurse were so nice! In time, I expect that you will forge new relationships and feel as close to them as your previous clinical team in Singapore. I certainly hope so! In the mean time, "hang in there", and know that myeloma days will pass, and "happy, normal days" will eventually return.
Sending lots of encouragement to you "across the pond!"
Tabitha
Marjorie - Glad you made it safely back to Scotland. I cannot imagine what you went through in giving up your initial myeloma team. That had to be incredibly difficult. It is wonderful that you found a myeloma specialist in Scotland. Here in America there are several states where there are no myeloma specialists and the two places where we have homes – Nevada and New Mexico – are among those. Fortunately, we went to a specialist at a cancer center in Texas and have been very pleased with the care my husband has received there. Like you, there are days when we "forget" about my husband's myeloma, which are delightful until the harsh reality returns when side effects rear their ugly head. Please continue to keep us informed on your experiences as well as the care you receive in Scotland.
Dear Tabitha, many thanks for your supportive, understanding comments. I hope that you and your husband can enjoy some great non-myeloma days. With best wishes from the other side of the pond!
Hi Patty, I am glad that your husband has found good treatment in Texas - my geography of the USA tells me that you have some considerable journeys to make. I hope that you can both 'forget' about the myeloma for lots of days and enjoy life together. Thank you for your kind thoughts and good wishes.
Marjorie, I really enjoyed this article and am sitting on our Lake Superior shore, Northern Michigan, trying to forget doctors appointments and procedures that are scheduled for next week. It's hard as I try and adopt your positive outlook.
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