The right time to change my working life
Joanna was originally diagnosed with chronic myeloid leukaemia (CML) in August 2010 when she was 41.
When I was first diagnosed, the doctors said, “Yes, you can live with this.” I’d just started a new job at the YMCA. I’d wanted to work there for a while, and it was exciting. I’d been there just two months when I found out I had blood cancer.
It was a real shock. I was concerned about money and whether I’d still be employable. But the YMCA were supportive and helpful throughout. Initially, I had a fair bit of time off for hospital trips. After that, I returned to pretty much full-time working.
I found that keeping busy was more helpful than ruminating. I was trying to be normal but actually, there was still so much to try and get my head around. Life was far from normal.
Facing unexpected change
Then I found out my cancer had a rare mutation and I was going to have to go in for a stem cell transplant. That meant quite a different scenario, I was really anxious, but I was optimistic. I thought I’d be back at work in six months.
Unfortunately, that didn’t happen for me. I relapsed soon after my transplant and had to urgently try other treatments. Because of that I had problems with my immune system, and I couldn’t return to work.
After about two years of the YMCA holding my job open for me, we mutually agreed that I couldn’t return. We parted on good terms, and I had a leaving do and everything, so it was all very sweet and everyone was very kind.
I had to apply for benefits and that was a really hard thing. At first, I felt quite ashamed – not that I’d judge anybody else – but I’ve worked throughout my adult life. Friends encouraged me and said, “No, you’re entitled to claim this.”
I started doing a morning a week volunteering in our local theatre, posting information on websites and saying what shows we had coming up.
But I wanted to have more to focus on and found out about an introduction to counselling course. I mulled it over with a couple of friends and family members. They said I’d be great at it because they always talk to me about their problems!
I also talked to my consultant, as I was feeling uncertain about whether I would still be here in a few years. Is there any point in doing this if I’m on the way out anyway? My consultant said, “Let’s work on the basis that you will still be here.”
I was worried about getting into debt, but the college allowed me to do the course part time. That meant a reduction of fees, and it was much better for my health. Plus, one of my friends helped me get funding from a few charities. A family member funded part of it as well.
Even though I again relapsed and had to have treatment during the course, I got through it. I got my counselling degree three years later, so I was really chuffed about that.
Getting back to work
A local mum had set up a charity, ‘In Charley’s Memory’. I started volunteering there and basically created a part-time post for myself, setting up a counselling service for young people within the charity. Now they’ve got 17 counsellors.
I was working there until summer 2018. At this time the drug I had to take to control the leukaemia was causing more complex side effects, and I was really pushing myself and feeling quite worn out. So I took the decision to step away from the charity.
Setting up my own business
I’d always thought about setting up a private counselling practice and it felt like the right time. That’s been going for a year now. I run it from home, which means I can pace myself.
I know about counselling but having to do business plans and set up marketing strategies and register for tax was all new to me. I asked myself, “What am I doing here with all this?”
I was getting Personal Independence Payments (PIP) and Universal Credit, and through that I was able to join a business start-up scheme. I got mentoring and a little bit of extra money while I was setting it up.
I’m upfront with people about my health issues, and sometimes I have to cancel with short notice because of unplanned hospital appointments.
Looking after myself
I still have a spiritual advisor, and he’s very good about talking to me about pacing myself and just ‘being’ rather than ‘doing’. I managed to have a lovely holiday in Cornwall in September through a women’s charity. That gave me a few days away to just think.
Sometimes I feel guilty that I am not doing as much as I should be. When I start thinking that way, I give myself a talking to: “It’s OK – I am doing the best I can.” I’ve got more compassionate with myself as time’s gone on.
My advice to others is to try and be realistic about what you can do. I know now I put too much pressure on myself to get back to normal.
Feeling positive about change
I feel very privileged to be able to do the work I do – supporting people when they’re going through difficult times and being able to do it from home.
I didn’t envisage I’d be in this situation, but I now feel that counselling is my vocation. It makes sense for me and for the life I need now.
Janssen-Cilag Ltd has supported Blood Cancer UK with funding for the production of this web page and others within the ‘Living well’ section. It had no influence over the content.
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