When nothing changed but everything changed

Perhaps it is my annual lopsided squash and a squeeze (aka mammogram) looming on Wednesday or the fact that I took Glittering a Turd (Kris Hallenga) as my Center Parcs reading book; but I feel I need to complete this blog bit on my cancer journey. It’s only one of a myriad of stories out there for sure, and I didn’t accomplish anything like building CoppaFeel! Still, maybe it helps someone else out there and shows what cancer can be like for those with children. Having a three year old, at the time of diagnosis was hard enough, for those juggling toddlers and younger, my admiration is huge. This process takes so much from oneself but also from those around helping along the way; cancer takes both a warrior and a village.

So, results day was a strange mix of emotions, part grieving for my Gran, part apprehension about what was coming my way. I was home with the Littlest as she didn’t like leaving her Mama at the best of times, but we also didn’t think she was old enough to understand a crematorium funeral: “what’s that giant box?” being a very likely questions in a loud voice no doubt! We now know an awful lot more about the littlest person in our family, whom is very likely neurodivergent or ASC (autism spectrum condition). She could only be left with a couple of people and I am forever grateful for my friend coming over with her Littlest that day.

I am not a fan of afternoon appointments when you have results to find out. It just makes the day feel ridiculously long. Admittedly, it can be handy, that you can legitimately hide under your duvet in a reasonable time frame, post appointment and wish good night to a day. I took my Littlest on a long dog walk to see the horses, she loved to see.

As a Mama whatever the thoughts and feelings are you plod on, outside there was Spring, daffodils and sunshine. My husband was away the night of my diagnosis, so it was just me and the Littlest, plus the paw family. The next day I got up, and got on; another Spring day, another dog walk. Best foot forward, my life had changed but the family needed stability and I wasn’t quite sure of the road ahead nor how to explain it to a three year old. Smile on, foot forward, keep going, life doesn’t really end till your six feet under after all, does it?

As I couldn’t be at my Gran’s funeral, I channelled my mourning into sorting her funeral book and flowers in the gap between our last goodbyes on earth and the funeral day. I was by her side for her last three hours, still gloved and masked due to covid. She literally died after I left the room to grab some lunch for me and the family staying at her house. I would have stayed had I known she would pass then, but the staff said, it is often the way; they won’t always leave with one they love beside them. I sat beside the one person in the world who I desperately wanted to talk too, who knew the journey of breast cancer as she had travelled through it twice. But Lilia was a secret to be hid, as I watched my Gran struggled with the transition of world to world beyond. Some moments are for talking and sharing things, others are just for reminding a person how loved they are in Earth and in Heaven. This was her time of need, not mine. But oh how I've missed her in so many ways and at so many times on the cancer journey. She was probably the only person I have ever rung and cried to on the phone in my life. The intertwined journey of cancer and grief was such a strange one, I'm not sure I really processed either; cancer treatment doesn't give you a whole lot of time to dwell on much except living and keeping going in order to live.

Funeral preparation kept me busy, but there was no avoiding Lilia (my boob lump). Having a degree in Medical Genetics and having studied and worked on cancer, my biggest concern was metastasis. In some strange ways the presence of Lilia was kind of grounding during this surreal time of grief and wonder about the future. She was a constant, there when I got up and there when I went to bed. She clearly wasn’t going anywhere.

On the day before the results appointment, I remember lying in bed thinking “the only difference between today and tomorrow is that, tomorrow, I may know I have cancer, and tonight, it isn’t confirmed; I will be the same person, but possibly not the same person.” The unstoppable hands of time always move forward, one day drifts into another in much the same way as ever, but in yet so many ways drastically different was on the horizon. I always question whether knowledge really is power or not?

My Gran’s funeral was being broadcast live on a private channel for those who couldn’t attend. Truth be told, she had outlived most of her friends and those still alive, often were in the grip of dementia. But a scattering of family, including myself couldn’t be there, but wanted to remember her. I had sneaked a view of the start of the service, but the coffin coming in was too much for me, although I was happy the flower arrangement looked beautiful. I was trying to hide the service from the Littlest so gave up watching it in the end and saved it for another time.

A neighbour kindly gave me a lift to the hospital. I took my place in a small waiting area, and time ticked really slowly. There was the usual hospital radio on, hopefully lifting the spirits of someone somewhere hopefully, but not helping me. I tried to relax, tried to work on deep breathing which in a mask is not great; I watched the tick-tick of the clock and finally heard my name, the appointments were running quite late; making the already difficult wait seem harder. I was taken to a small bluish or grey coloured room; a pokey affair, bare aside from the furniture - a bed on the left side, that was pretty much the width of the room. I had the chair by the door with a stainless steel medical trolley on the left of me, adding to the clinical coldness; next to that was the bed. There was another chair in front of the door area. The nurse / nursing assistant disappeared through another door at the end of the room and I was left on my own. The room had no external light and was bleak in outlook; a clinical cube that could have been used for anything. No inspirational quotes on the wall just an empty void. One step closer. I could hear movement and sound from those on the other side of the internal room door, but not actual words. Eventually, steps proceeded toward the internal door and in came the consultant and another nurse – a breast team nurse. Poor her, she got stuck with me for the journey! She would witness and help me through my lowest moments, although largely I just got on with it. I guess I just stuck with her as she was there right from the beginning.

I don’t think I will ever forget that day, the clock might have ticked on, but just for a brief moment or two it stopped for me. Possibly the words “you have cancer” took only a second or two to be said and were said in a calm, straightforward manner. Actually, at that point I wasn’t bothered about those words at all, my only question was “has it spread’. At this point the axillary lymph nodes (those closest to the tumour) were clear, indicating no spread. That part was a relief.

Those three little words took time to process though. It was a bit of a haze. The breast care nurse sat down on the bed and talked me through it, what kind of cancer it was and the science part; my brain could compute this at least better than the other parts of the appointment. I was trying to process it and remember it all (she kindly said she would write it all down). I remember her saying gently “it’s cancer, you have cancer”. Again, nothing big or convoluted, nothing seemingly earth shattering unless you are the person sat in the chair hearing this. My world shifted, even if the actual world rotated and spun as it always had done; I was on the planet, but not on the planet at the same time. It took me about a month to truly get my head grounded again.

My initial reaction once it seemed that the cancer had not spread was to just chop my boob off, in fact, I offered chopping of both boobs for good measure. Get rid, get done, move on. Going by my Gran’s treatment, she had a swift mastectomy and was lucky enough to escape further treatment. I really expected that within a week I would be in surgery for the mastectomy. Erm, no it didn’t happen like that! It was a hell of a lot more complicated journey, physically and emotionally.

After an examination and various measurements being taken, I was to have an MRI before speaking to the consultant again about a treatment plan. I left the room with a lovely blue pack of “welcome to your cancer” information - my cancer notes, some booklets on the type of cancer I had and a vague idea of treatment pathways ahead, to be discussed at the next appointment. And that was it, I was on my own, finding my way out of the hospital armed with my handy file. I decided to walk home, I couldn’t face being in a car with someone and I just needed that air and movement. As my appointment was late, I rang my friend to check in and check that was ok. That was the first call I made when I had to try and get the words “I have cancer” out my mouth. I remember standing there, by the ambulance bay and I couldn’t get the words out, they were so alien and weird, eventually after a pause I managed to utter them. It took a lot of practice over the next month to eventually get used to those three words.

I walked home past a coffee shop, so picked up a hot cocoa to help ground myself and rang my husband. Same three strange words had to be uttered again “I have cancer”. I don’t think I really remember any more of that day. I curled up under my duvet, head on my pillow; same bed, same surroundings as the night before, but this time I knew “I had cancer” and nothing was the same, not anything, at least not for me. The ripples of the “I have cancer” would spread across the family in time. Life was now about adjusting and surviving, through treatment and beyond, unlike Buzz Lightyear, infinity wasn't really in my sights!

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For those more interested there turns out to be many different types of breast cancer. Unsurprisingly, I had invasive ductal carcinoma, which explained why it felt reminiscent of a blocked milk duct. I was oestrogen and progesterone receptor positive, (very positive), HER 2 negative. I would later learn through the treatment journey, I had basically had a bad boob!

Image source: https://my.clevelandclinic.org/health/diseases/3986-breast-cancer

Mammograms image source: http://nanasrecipebox.blogspot.com/2014/10/mammo-grahams.html Perhaps I should make these for a post lopsided squash and squeeze treat!