I've not written a post for a few months. I haven't managed to find the right words to sum up how life has been recently, but challenging is an understatement, its been a very rocky road.
There is no doubt that I am blessed with three of the most amazing, beautiful and intelligent children but they are also incredibly challenging as they each deal with their own personal challenges. For a single mum with no support it is hardly any wonder that my stress levels are reading off the scale these days.
I am finding it harder and harder to take that moment to smile and meet the expectation that people always expect me to bounce back and smile after they tell me it will be ok. Maybe they don't know what to say, maybe they are not interested or maybe they just don't get how hard it really is to keep things ticking over day to day. Its not anyone elses fault, they just don't know what its like to live the way that we do, continually walking along a very thin tightrope in a force ten gale, with someone firing missiles at you for added difficulty. For the most part I manage not to fall off, somedays I can even manage to inch along a bit further, but this week........this week I have been hanging on by my fingernails and even then someone was stamping on them.
Everything seems to have become a battle, each child has their own set of difficulties and rather than being able to purely focus on them, I now have my own. Crushingly bad headaches and disturbed vision, add a little dizziness and it means bed early, every night. Not conducive with a child that struggles to sleep! Add to this a departmental review at work, difficulties with the CSA and council, it all adds up to a REALLY big headache.
But there is actually something else that lives in our house too. Cancer, C A N C E R, that lives in our house too. After nearly three years its tiring, always concentrating on keeping the cancer at bay, there sometimes seems little time or room for anything else. Even when treatment is finished, it will still live with us, never far away and whilst I look forward to next April and to the end of Matthews treatment, there is also dread in the pit of my stomach that it will come back. No one really understands this, unless they live it- the worry, the fear and the dread that you keep locked away from sight, until it pops up and smacks you hard in the face.
Thats what it did this week, when Matthew complained of pain in his right testicle. When the duty Dr asked me how he was diagnosed with Leukaemia, I looked at him as he said "there is the possibility of secondaries, but its unlikely". That's secondary cancer, its unlikely as it is not presenting as they would expect, if thats the case and his blood counts are normal and not indicative of relapse. But I don't rate the word unlikely very much. It was unlikely that he would get cancer, it was unlikely that the anthracyclines would damage his heart, it was unlikely he was having a reaction to the Aciclovir that sent him into renal failure and it was unlikely that Lansoprazole would send him into such a deep sleep he required an urgent MRI! So I can't trust that word unlikely very much.
So when I'm told to stay positive I find it hard whilst I sit and ride this one out, Matthew completely oblivious. I am allowed to have a wobble on occasion, on this tight rope that I walk, in the force ten gale, holding very tightly to that word "unlikely".
