What I know

All I know

So to catch you up to speed. 

Diagnosed with invasive breast cancer in September 2018, double mastectomy in December 2018, all clear in January 2019.
Found a lump in right armpit in June 2019. Biopsied and confirmed as same cancer in July 2019. Total lymph node removal surgery of arm pit in August 2019. Results confirmed 25% of nodes removed had cancer. Awaiting oncology appointment. Chemotherapy to start September until middle of February.

I’ll be honest with you. I wouldn’t be sharing this information, like this, if I hadn’t prematurely celebrated in January and therefore wanted to do my bit and raise awareness that it can in fact also happen to you. I would probably have still written but definitely not felt the need to share yet. The vulnerability feels different when you’re out of the other end looking back at your defeats to when you are smack back in the middle of the battlefield under attack.
But I did share. It felt right to share when I did. But it means that I now feel a responsibility and a sense of duty for you to let you know what’s up. I know you wouldn’t judge me if I didn’t but you have been there for me. And so I am choosing to let you in a little.

I am asked constantly how I am doing and how I am feeling. I am thankful and grateful for such care and consideration. We all want the response to be one of constant hope and optimism, that yes I have just had the most invasive surgery to date but I am doing well and healing nicely, feeling ok about everything and that it will be OK. Batting off the missiles like I’m wafting a wasp away.

The truth is I am tired. My surgery went ‘well’ and the cancer that they know about has been removed. But I am sitting here with a steadily growing seroma the size of an orange under my armpit, significantly restricted range and considerable discomfort. That yesterday I had 150mls of serous fluid drained from my wound in the hope that it would ease and encourage reabsorption when in fact, less than 24 hours later it has swollen up again. That I am on the phone to my team every other day. The truth is that my holiday this week with my kids had to be cancelled and ‘postponed’ to next year. The two overseas work engagements have also had to be cancelled and that my professional life is rapidly changing shape. That last night when I French plaited my hair for the last time before I get it all cut off tomorrow I broke down in front of the mirror and wept for what felt like hours. The truth is that I have given up shaving any part of my lower body because, well what’s the point. The truth is that my seven year old son is doing his version of reiki healing on my body as he has seen me do it on him for many years and wants to help and that my five year old daughter has just had her long red locks cut into a short tidy bob to match mummy’s shorter hair cut.

The truth is that if I had not absently felt my armpit I would not have found the lump that had led to this pivot in my path and I am petrified when I think of the alternative considering the recent results. But mostly I am thankful. I am thankful that I checked and they checked and we are where we are. 

I still don’t want to have chemotherapy. I haven’t had a belief transplant just because I am being told that statistically if I don’t do this, the odds are against me.
However I will have chemotherapy because my brain is still working and I am wise enough to be able to weigh up all of my options whether they come from science or nature. It is my choice to make. And right now I would rather be here, on this Earth with my children and deal with the toxicity and side effects that treatment will bring than live in fear that there are cancer cells lurking just waiting to manifest in a party bus of another tumour that next time I have less options in how I choose to respond. 

There are probably only three things that I have understood since I first found a lump that I still can say with conviction. 

1-    I have always understood that there are no wrong or right things to do. That we are unique and our diagnosis is different so there is no judgement regarding our paths.
2-    I have always understood that as long as the choice is our own then that is all that matters. If we feel coerced into something that doesn’t feel right then we should try and muster the strength to challenge until we can play a part in our story rather than be dictated to.
3-    I have also always understood that this too shall pass.

I have also said other stuff which now feels highly immature and idealistic but it was what I knew and believed at the time. But the goalposts moved. I still believe in the big bad pharma but I believe in people more. And in six months time from now, I will look back and realise that even now, I knew nothing of what I will know then.

The truth is I don’t know how I am feeling. I don’t know how I will feel when I start the process of cutting my long hair shorter. I don’t know when the swelling under my arm will dissipate or the bruising will subside nor when I will have any sensation on the back of my arm. I don’t know if I will get wigs or wear headscarves. I don’t know how I will feel during treatment. I don’t know when my eyelashes will fall out and if I will keep my eyebrows. I don’t know how I will sort out drop offs and pick ups at two different schools for my kids when term starts and I don’t know how many days after a chemo infusion that I will feel well enough to run, climb, dance or do anything that makes me feel like me. I don’t know. 

For the first time in my life I am walking in the unknown. A different unknown to the unknowns that I experienced before. Proper unknown. Not ‘where shall we go for Christmas dinner this year’ unknown. And as I tentatively and uncomfortably feel my way I find a little space that seems as good as anywhere else. And I sit. In the unknown. But I chose to sit down. Rather than running around frantically trying to avoid the inevitable. I sit still. Knowing that those close to me will see me sitting and join me.