You don't have cancer, so what next?

Last June I had a migraine that lasted 11 days. I've had migraines since I was a small child. I present with auras, visual disturbances, metallic taste in my mouth, I start to slur my words. This happens anything from 7 days to 5 minutes before the migraine starts. I'll have an episode like once every 12-18 months. The rest of the time, I get migraines that last 2-3 days, at least once every 6 weeks. They've become part of my life, I accept them and work around and through them. I also suffer with chronic pain in my neck after an injury at work 24 years ago, this aggravates the migraines also.

But every now and then I get one so bad, I need medical attention and in the past when I've gone to the hospital, meningitis has been suspected due to my aversion to light and touch and I've had numerous lumbar punctures. I did have viral meningitis in 2000.

This time I decided to go to my GP, I had visual field tests and an MRI. There's a tiny lesion on my right temple but this is probably scarring from the migraines and not the cause. I also have a cough and experiencing shooting pains and numbness in my thigh bone and around my hip joint. I am tired all the time, not sleepy, not lack of motivation, just tired.

The Doctor ran routine bloods.

A week later and now in the UK, she messages me to say I need to get a repeat test carried out. The white blood cell count, platelets and neutrophils indicate at the very least I have an infection of some sort. The count is slightly decreased and then my father died. My health was put on hold.

I return briefly to Dubai, still coughing and saw a pulmonologist. I'm a smoker, the cough is bothering him. I'm diagnosed with pneumonia, given antibiotics and an inhaler. I was hospitalised for pneumonia in 2007. I return to the UK for 2 weeks.

My blood cell count increases, so back to the GP, more tests, an MRI of my hips and thigh. There is nothing there, a chest CT, change in antibiotics. We move house.

I'm referred to an oncologist. My body isn't absorbing iron, this is corrected, yet still my white blood cells and platelets remain high. She suggests the coughing may be due to a silent reflux and recommends I take a one a day tablet. The coughing eases.

I have a bone marrow biopsy. I wait 2 weeks for the results. I know the oncologist just wants to rule cancer and bone marrow disease out, she says it may pick up the very early stages of a problem that she can deal with. I spend 2 weeks stressing out. I can't help but think the worse. I'm still having more frequent migraines, stopped taking the preventative medication that was prescribed by the neurologist last June, it's not working. The biopsy was one of the most uncomfortable things I've ever had done in my life and 3 weeks on the site is still quite sore, doesn't help I keep banging it.

So I got my results last Tuesday, no cancer, no bone marrow disease, no known cause. Repeat bloods are taken, count still high, body still not absorbing iron so lifestyle changes to diet are put in place, another migraine, medication doesn't work and still having pains in my hip and thigh bone. I'm still tired, even after 8 hours sleep.

I been googling my symptoms, it seems I'm stressed. No wonder with all this going on and my father dying last year. But all this started before he died and still doesn't explain the high white blood cell and platelet count.

I'm back in the UK next week for the summer, I'll be monitoring my levels of tiredness, the bone pain and migraines. I've stopped drinking coffee and reduced my intake of wheat products and dairy as these are the 3 things that can prevent your body from absorbing iron. Other than that I am at a loss as to what to do. I'm glad its not cancer or a bone marrow disease, but it leaves me in the same position I was in last year, I'm just not well and no one knows why.

Volunteer fatigue

I was feeling overwhelmed this week, even my 'to do' lists had sub lists. After blogging about it a friend at one of the places I volunteer at, suggested I take some time off before I start suffering with the all too common 'volunteers fatigue'

I've taken on too much, but in reality all I actually do is go to Viva once a week to train teachers, attend Kungwini twice a week to support disabled adults in the workshop and educational activities in the Children's home and tutor a grade 7 child two afternoons a week. Apart from swimming most mornings, daily dog walks and food shopping and coffees out, there's no real reason why I should be over doing things, especially since the kids left home in January.

Volunteering costs money, almost a full time wage some months. I can't teach without resources and although I have plenty of stuff left over from my the days when I had a career, it needs adapting, updating. I've already donated the stuff the kids left behind that they no longer wanted, such as clothes, toys and stationery. I'm also very imaginative and creative with making my own resources but it's become very time consuming. Do you know how long it takes to draw/write 46 worksheets or colouring in pictures? I make and sell buntings and bags to raise funds and blog to raise awareness.

But what happens is I see something, get an idea and run with it. This involves raising funds, phone calls, emails, writing proposals, visiting people, cold calling. I used to make medical rep appointments with Doctor's surgeries and hospitals so I'm not easily deterred.

The last 3 nights I've been burning the candle at both ends, up till gone midnight working on several projects, researching, contacting other charities, writing sponsorship proposals. It's almost become a full time job and I could do with hiring a PA.

What I really need to do is focus though on what I can do and do well. Pick a subject, a project, a facility and run with that and that alone.

I've decided that my 'thing' is education. Without education the other issues in South Africa can't be addressed, it's not just about educating the children in the townships in school, it's about educating their parents also.

Without education the issues of poverty, crime, AIDS, rape, homelessness, child abuse and exploration cannot be addressed. Throwing money and donations of food at people does not help in the long run, the more you give the less people do for themselves, the more they rely on handouts.

People need to learn to help themselves, it's evident after a visit to Mamelodi this week that no one helps these people and no one helps them to help themselves. The river flooded a week ago, there is no way to cross it, it has left people stranded, unable to buy food, get to work and earn money and for children to get to school, missing even more of their education.

I'm up to date now with my 'to do' list and I'm just waiting responses for my proposals, but in the meantime I'm going away for a few days this weekend to switch off and relax.