Normality

There’s many discrepancies in the word normal! I have to admit I never perceived myself as being particularly normal in many aspects- but when you are told by the medical profession that you are in fact so unusual, you do reassess yourself. Things that I’d always taken for granted, even through my multiple knee surgeries, are now quite imposing. I know nobody’s staring at me so why do I get this bizarre sense that they are. Rewind to a week last Thursday. Well, what can I say? After a 4 hr journey I walked into a bar and met, for the first time, a whole group of people who actually have the darn same rare disease as me. No words needed, and tears again in my eyes now as I remember back to the emotions I felt meeting other OMies for the first time. I’d be interested to know whether all sufferers of rare cancers and diseases feel the same when they meet each other. One thing struck me as we laughed and chatted into the late evening; no judgement, of any sort. What a wonderful welcome feeling. And we are all as ‘normal’ as one and other. A question has been asked to the group- what does having OM mean to you and how has it affected your life? Here’s my brief answer. Believe me it could have been a lot longer but I didn’t want to moan on. For me it’s been a totally life changing diagnosis. Having been diagnosed with an incurable cancer and then having to struggle for information and resources to help in the understanding of OM just adds to the trauma. The constant explaining as others also say that “no, we are not ‘fixed’”post plaque radiotherapy and the permanent underlying worry that accompanies every niggle in your body that at one time you would have ignored. The constant calendar of medical appointments which disrupt any chance of moments to forget. The impact on friends and family, who frankly haven’t got a clue what’s really going on inside an OMie. The concern as 99% of people in the medical Profession that you come across, find you ‘fascinating’, when all you want is compassion. The incredible people I’ve met purely because of my diagnosis and the way I have re-evaluated my whole life moving forward. Then there’s the down days, and boy when they happen they can be way way down. There’s no manner of light hearted comments that can pull your mood any higher than a gnats whisker off the floor. The lunchtime news makes you cry, the silence of the cogs in your head deafens and the inability to hold a conversation about ‘anything’ without a small pool filling your eyes. What do we do with these days? What should we do with these days? ‘Just let them be’ I tell myself. They are normal, the new normal. The quicker I understand this the less frustrated with myself I will become with the down days. In the light of a new morning I was pleased to discover that yesterday’s darkness had lifted. Again, no apparent reason, it just had. I continued today what I couldn’t cope with yesterday and prepared without fuss for what may happen tomorrow, as who really knows to be honest. There’s been an array of medical appointments this week with many more booked in moving forward. One surgical next Friday to remove one of the niggles I mentioned earlier which at one point pre OM would have probably been left well alone. But no, not now- there’s a whole multi disciplinary team meeting about my fascinating body and it’s various idiosyncrasies and they’ve decided on excision of said niggle. So Mother’s day this year will most likely be spent in hospital. I hope the foods nice and there’s plenty of room for me to spend the day with my children and hopefully my Mum too! It’s become apparent that cancer keeps no diary. It has no knowledge or cause for concern of a calendar date. That was apparent after being formerly diagnosed on my wedding anniversary. At least I’ll never forget another one! There are definitely positive things that are developing as I reshape my journey. The involvement with the charities has been progressing. I found myself on a stage at the Professional Beauty Show at Excel, explaining to other professionals in the industry how we can learn to identify the early warning signs of skin cancer through our work and that we could potentially save someone’s life after being trained to recognise these dangers. Wow, what an amazing thing to do. I’m no doctor, but I could still be responsible for saving a life. That training and involvement has only come about through my own diagnosis and through a fab lady reaching out to me after seeing my interview on ITV. Www.masced.uk It’s worth knowing how, even as a Mum and a wife, I feel more confident. More people have asked for articles from me too. I’ve been a little slack though as my flow has been halted with medical appointments and low moments which I’ve not wanted to share, but I will write them. I enjoy it. Again, because of something I’m doing through OcuMel UK, I met with a friend from my teenage years to discuss how he could help with the Gala Fundraiser Meal too. That lifted my spirits, seeing someone that I knew so long ago who hasn’t been caught up in all this; a fresh unburdened old friend. Sorry for the lengthy post, it’s been the longest gap in my writings this one.