Rachel C. on March 2, 2017
I was Diagnosed with:
Multiple Myeloma (IgA)
Postgraduate student (Education)
Type and Description of Treatments:
6 cycles of CDT (chemo, steroids & thalidomide) followed by autologous stem-cell transplant. Monthly Zometa infusions.
How do you feel today?
Really excited to see the bulbs emerging - the signs of another Spring!
Since the diagnosis, what has changed in your life?
I appreciate each new day. We plan more in the present and less in the future and because of this, we have tried to harness more opportunities. Smaller things elicit greater joy.
What is going well for you right now?
I have started a new postgraduate course, working towards an MA in Education. This is an amazing opportunity to study without trying to squeeze it in on top of a working day.
What is not going well for you right now?
What has been the most challenging thing about having cancer?
You have to decide if you are going to sink or swim and even when swimming, you know there is an impact on your family and friends that you can't remove.
When difficulties overwhelm you, where do you go for support?
When I was in Kings College Hospital, London, the Chaplaincy team were extremely kind and supportive. I also have a very resilient husband who managed not to get overwhelmed himself (he has taken up painting again since my transplant) which has helped me massively in addition to supportive and prayerful friends & family. My Myeloma journey has been in the context of a Christian faith and this has given me much peace of mind throughout.
How have your long-term goals or life goals changed since diagnosis?
As Myeloma is a type of cancer currently without a cure, my goals are mostly centred around making good use of each day and spending more time with family and friends. In terms of career, I enjoy passing on knowledge to those who will have the life-spans to make good use of it. I would like to do more writing as well.
What is your work arrangement right now? What are your hours?
Following pneumococcal pneumonia last February, I decided to leave my post as a Head of Department/SENDCo in July 2016 and signed up to a part-time postgraduate course. I am also a Governor of a local school. For the first two-three years of my diagnosis I worked full-time, leaving the house at 7am and getting home at 7pm with work to do at home as well. In the fourth year I dropped down to 0.8 but ended up spending a lot of my day off doing school work.
Since the diagnosis, what has changed in your work life?
Ironically I was in the process of changing from one school to another at the time of diagnosis. When I started my new job I was a couple of months into CDT treatment but I went to work every day. In the short-term, I gave up all the 'extras' (as I used to do some additional conference work) but life went on fairly much as before. Over time, I have found there to be some lasting effects from the treatment including slower processing speed and ongoing tiredness plus a condition-based susceptibility towards pneumonia so now that I am through the three-year barrier I have decided to make changes that will help me to pace myself.
What has helped you continue to work the most?
Reasonable adjustments to the work environment, particularly during the year of treatment. Emotional support from our excellent school nurse and other colleagues. A very understanding attitude from school head and Governors when needing to book time off for hospital appointments. Support from family who initially found it reassuring to see the 'status quo'. From my perspective, it was a tonic to focus on the needs of others and to keep my brain busy.
What advice do you have for others trying to work through treatment?
Make sure you get hold of a copy of the Macmillan guide 'Managing Cancer in the Workplace.' It will help you to know what to reasonably expect both of your employer and of yourself. I came across it half way through my journey! Guide the expectations of others e.g. I asked people not to feel sorry for me and I also asked not to shake hands with parents pre/post meetings during my treatment and explained why.
How have you dealt with any side effects of treatment?
While I was on CDT my reaction speeds slowed down so much that I took lifts and taxis to work instead of driving. I do sleep in when I need to now as well.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Wow! I'm still here! I wouldn't change anything. One of the most helpful things my husband did was to trawl the Internet and select out anything positive to read to me. I would say it was a good thing to look for positive stories written by Myeloma patients and to focus on those.