ASD

Autism spectrum disorder, what does this mean? It is now the term for all autistic disorders. It’s the main umbrella that all the different types of autism reside under. My 2 boys Anthony and Shane have ASD. What they were formally was Anthony had Aspergers and Shane had Non Verbal Autism among other things. They both are just kids with ASD which is ironic as they are on entirely different ends of the spectrum. The differences between them is astounding. Yet they are both classified as having the same thing. People often ask me 2 things and one is how we cope, how do I do it?As I have answered before, this is not about coping, you just do it. This wasn’t a choice, I did not chose to have 1 child with autism let alone 2. It’s not a conscious decision that you wake up one day think I wonder what it would be like to be a mum of 2 on the spectrum. Secondly I get asked what a normal day is like? This I laugh at because there is no such thing, I have no idea what a normal day is, no 2 days are the same. Just when you have it figured out for each kid on what there new thing is, it goes and changes. For me normal is not knowing if everything is going to turn to shit in a hell of a hurry. If we are dressed, fed and out the door then that’s normal, might have taken an hour and half one day and 20 mins the next but hey we are out the door. Like I tell people I don’t do normal!

Chemo

Chemo that dreaded word, you have your diagnosis and now its treatment time. Terrified is an understatement when you are faced with a treatment plan that you have heard about, possibly seen others go through but now you are faced with it. You hear stories about other people’s experiences with it and neither you or your doctor know how its going to effect you. How your body is going to react is very different from one person to the next. even on chemo this whole thing is still surreal for me as I am not text-book. Things my body should be doing on chemo it’s not and things my body shouldn’t be doing on chemo it is.                                                                                   No matter what the treatment plan is or the side effects keep it real. Don’t tell people you are fine when you’re not. Chemo is just as big a head game as it is a physical one. You are allowed to say stuff the world and hide for a day, you are allowed to give into your cravings and eat what you want. If there is ever a better time or greater need to listen to your body then it is now. If you need sleep, then sleep, if you have no energy to do anything then don’t. If you are hopped up on steroids and need to burn the energy then do so. No body can truly understand how good or bad you feel mentally, physically or emotionally. Remember to be gentle with yourself, don’t expect anything and take each day as it comes. I have good and bad days, from mentally and emotionally flat to physically jittery and not being able to sit still. The trick is to find a way to use it your advantage. Draw strength and inspirition from where ever you can get it. You are going to need to muster what ever inner strength you have to get through what will be the toughest thing you are going to go through.

We all have bad days!

Cancer Diagnosis

Nothing can prepare you for a cancer diagnosis, whether it’s quick out of the blue or a long drawn out process, either way it’s a shock. For me it was a real long drawn out process, it was a year of not knowing, a year of tests. Every time we thought this is it, this is the one, this the test that will give us an answer, we would go to the haematologist oncologist for the results and nope it was inconclusive. You become complacent and think ok we are not going to get an answer and when you finally do that’s a shock within itself. From dozens upon dozens of blood tests, 3 Pet scans and 5 biopsies later and all we could narrow it down to was yes its Lymphoma but what type came down to a 50 / 50 shot between non-Hodgkin and T-Cell Rich. However that didn’t mean it wasn’t another type that could be masking as something else. The biggest issue we had was that I had no symptoms it was found by pure accident when I had a CT on my back that I kept hurting. Even after a year and progression of the disease I still had no symptoms to speak of. So came the day we had to start treatment which made it difficult not having a definitive answer so we went with treating the worst case scenario out of our 50 / 50 shot which happened to be the T-Cell rich. Even now to look at me you wouldn’t say I am a typical cancer patient, even though I am receiving active chemo treatment. I have lost my hair like most cancer patients but I am also doing most of the same things. Waiting a year for an answer is rough but so is doing chemo. Starting chemo is just as overwhelming as the diagnosis itself. I will say this to any body at the beginning, middle or end of there cancer journey, whether your going through it as the patient or watching someone go through it, be kind to yourselves it’s not easy. The more answers you are given about your disease the more questions you have. Cancer changes you physically, mentally and emotionally, at the end of the day you are left with one question, what next?

Happy New Year

Happy new year to one and all, may 2018 be the best year yet with what ever you have planned. Remember to live, laugh, learn and play hard while making it a happy and safe one. It can be a truly great year that has endless possibilities so let’s get out there make it happen. Promise yourself to make it epic and seize the bloody day!

I know i will

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