The Union

In December 2016 Dylan joined a club that no one wants to be a member of & consequently I immediately became a member too. It comes with a lifelong membership & it costs more than any club I have ever known.

I’m not really a fan of clubs, preferring to do my own thing in my own time & in my own way. Unfortunately with this club you are not allowed to leave no matter how much of yourself or your soul invest mentally or physically; you just never stop paying. It is more of a dictatorship & it will strip you of everything…if you let it.

To begin with I felt like such a fraud. I did not understand the rules. Smiling felt ridiculous, trying to be normal felt like a complete impossibility & trying to fit in with non members made me feel like a complete outsider. It has taken & will continue to take me an eternity to work out what I am meant to wear to this club; it is filled with so much commonality & diversity all at once.

The Cancer Club: it has got way too many members & is sadly still taking on more.

There is a distinct & definite line drawn in life once you are a member. On one side of the line is before; on the other is the interminable after. Dylan had six years, one month & seven days of a life before cancer was thrust upon his tiny existence; I had forty four years, one month & ten days before it was thrust upon mine. There is no going back & there is no way to erase that line. I do not know how it will affect Dylan’s future; I do not know whether he will grow up & if he does whether cancer will be a strange disquieting distant memory for him. What I do know is that cancer will be with me for the rest of my days. The sheer terror the word cancer brings is beyond comprehension; the cancer might go but the fear never will, the scars are both visible & invisible.

People often ask me where I get my strength from, I suppose it is within me & boosted by the elements of inspiration that I happen to stumble across from time to time.

A couple of weekends ago I approached a lady in the supermarket, she was collecting money for Latch (a Welsh children’s cancer charity); Latch have been wonderful to us as a family & I wanted to go & say thanks for all the incredible work they do.
I started talking to her & it soon transpired that her son also had cancer. By the time he had been diagnosed with stage four osteosarcoma his cancer was terminal & he passed away four years ago. I immediately felt ridiculous & as I tried to explain that I was not in her shoes she quickly held my hand, looked directly into my eyes & told me that she knew I understood & that she felt for my daily if not lifelong uncertainty. She told me that she knew exactly how I felt & that just because my child was still alive did not make me any less able to empathise with a large part of her life. She spoke to me of her depression & I understood. She spoke to me of her isolation & I understood. She spoke to me of her shock & I understood. She went on to tell me that in the four years since her son had passed away she had helped raise over £50,000 for various children’s cancer charities because in her words she wanted “to give something back”. As the conversation came to an end I went to give her a hug but she beat me to it; she hugged me so tight…a complete stranger whom I had dared to approach felt all of my pain & of course more.

I sat in the car for ages trying to make sense of the myriad of emotions coursing through me. I thought about how that lady had lived through every mother’s worst nightmare & was still here, still making a difference & still determined not to let this bloody awful disease strip her of everything. She was determined to be more than a mother of a child with cancer; that is difficult to say let alone do.

If that does not demonstrate strength, courage  & inspiration then I do not know what does.

Years ago, I graduated from university with a degree in furniture & product design & worked for fourteen years as an upholstery designer. At thirty two I became the design director for a large furniture manufacturer & then at the age of thirty six I was made redundant; a single mum with an eight year old son, a mortgage, school fees & all the usual bills. I set up as a freelance furniture designer; it was tough to say the least & I really struggled to make the the necessary adjustments.

Being made redundant as a single mother was petrifying, I could not see the wood for the trees; the humility & strength I needed to keep going was immense. Fast forward a few years & I am told that my son has cancer. To all intents & purposes life stopped at that moment; but I am still here & so is Dylan. I have no idea what the lady in the supermarket had gone through before her son was diagnosed but she had an inner strength & what she showed me was that despite her crushing loss, she was still here & was doing something incredible. I do know that she has other children & she talked about finding the strength to keep them as happy as possible despite their loss. She cannot protect them from the pain & just like the line that marks the “before” & “after” she cannot erase a life that for a short while brought them all happiness in their “before”; all she can do is hold their hands & move forwards inch by tiny inch.

On occasion, there are fleeting moments when cancer is not at the forefront of my mind, allowing me briefly to just be me & not just the mother of a child with cancer; not just a carer. These moments are essential for my wellbeing, for me; Siobhan. However, these moments scare me because somehow they do not feel real. Cancer is actually now so deeply ingrained in my psyche that despite those stolen moments I am not the same person I once was; standing the “before” me & the “after” me side by side is like watching day turn to night. I am like a Venn diagram of two equally sized circles; I have left parts of me behind & gained new parts. The place I need to find is right in the centre; the union.

It is not in my nature to quit; I do not give up…I never have in spite of anything that has been thrown at me…& there has been a fair bit.

I have so much to give & so much I want to do. I have no idea what tomorrow will bring but I know that I can take something into tomorrow because I am more than a mother of a child with cancer. I am that & so much more; as is that lovely lady in the supermarket.

That union with that lady inspired me; it gave me strength & it encouraged me to try to create a union between the two versions of myself instead of seeing them as two separate entities.

“Before” is where I gained the strength I need for “after”.

In some sense I am less than who I once was having shed so much of myself to change course because of Dylan’s unfortunate union with The Cancer Club; but in another sense I am so much more. I am more than a mother of a child with cancer.

I have recently realised that I am a union of my before & after.