Where were we? Yes, the private specialist suspected Ulcerative Colitis and assured me that this was no big deal and could be controlled with medicine. I had already looked into this a bit beforehand and was pretty sure most UC sufferers would take issue with that claim. On the drive home H seemed reassured by this tentative diagnosis; happy we had something to work with while I worried about what this could mean for my future and also for the increased risk of colon cancer, given my family history. OH. THE. IRONY. I was heavily sedated for the colonoscopy and when I came round the Doctor told me they hadn´t been able to progress very far due to a large, obstructive, polyp, that they had biopsied. He asked us to return a couple of days later for the results. I didn´t suspect anything, in fact asked if this could be what had been causing all the trouble and he said sure, quite possibly. H seemed rather upset when we got home and I, perplexed, put it down to his dramatic latin temperament. I didn´t even suspect a tumour. Of course I did what any person would do (and most definitely SHOULDN´T) in my situation and started to google. I started seeing little red flags that indicated a ´polyp´ of such a size could quite easily be cancerous (and in fact usually were) but I, ever the optimist, pushed those niggling doubts down. What I didn´t know is that while I was coming around from the sedation the doctor saw my husband in the waiting room and conveyed his doubts to him, in a serious enough way that poor H (who lost his mother to Breast Cancer not 6 months earlier) asked him outright “are you telling me my wife has cancer?”. All the doc would say is that it was opportune to channel us back into the state system and convened an appointment a day or two later. In the event my biopsy results were not ready so he told me to call the laboratory in another day or two and arrange to collect them. In the meantime I was sent down the hall to the surgery clinic where a friendly but noncommittal surgeon started printing off a ream of papers detailing appointments for a series of further tests during the following days. After so much delaying suddenly we seemed to be on some kind of fast track of exploration and tests. What was the rush? Isn´t it just a polyp? (gulp)
We found out what we were dealing with a day or so later. The timescale is fuzzy now but it all happened very fast, really from one day to the next we went from pushing and kicking at closed doors for help to shooting about to appointment after appointment. And so one weekday afternoon we set off to collect the biopsy results, both kids in the back of the car, me slightly worried on one hand that it could be cancer and on the other hand thinking surely, SURELY if it was they wouldn´t just hand me the results like that, I would be called in for a consultation in a room with white coats and hushed voices. SURELY? So off I trotted, down into the bowels (har har) of the clinic, down narrow windowless corridors with strip lighting that reminded me of the types of bunkers you see on shows about dystopian futures. There the secretary looked up my file, printed a letter, popped it in an envelope and sent me on my way. I walked all the way back up clutching the letter. Debating whether to open it or whether to wait. I shouldn´t open it with the kids in the car. How can I wait? I shouldn´t. I have to. HOW CAN I NOT? As I walked out of the building into the sunlight of that beautiful June afternoon I opened the letter and immediately saw:
My heart tripped. I gulped. I thought OH. SHIT. I debated telling H I hadn´t opened it, hold it in until we get home, but he got out of the car and came to me, looked at me and in all honesty I can´t remember what I said but he understood. He hugged me and I felt terrified. But we had the kids in the car, one sleeping, one looking out the window all big eyes and bigger ears. So we hugged it out, got back in the car and said LET´S GO FOR ICE CREAM!
When we got to town he took O on an errand as Y was still asleep (and as any parent knows there is nothing that can happen NOT EVEN THE WORST DAY OF YOUR LIFE that would make you wake a sleeping pre-schooler). Again I turned to my fickle friend Dr Google. I saw statistics. I texted one of my best friends. And I cried. I cried and I cried and I cried. Big, tear plopping, snotty, red faced crying in a parked car on a busy street in the middle of town. And then I got it together, dried my face, blew my nose and got back to normal. When the boys came back we went for a really nice ice cream sundae and talked about whatever nonsense we could think of as H and I avoided eye contact and held hands and smiled our sunniest smiles at the kids.
And that was one of the very few times I have cried in all of this. I have had moments of feeling scared, worried, sad. But apart from that first day I haven´t given in to it much, not even felt I was holding it back or covering it up. The scariest thing about all of this is having children. Thinking I might leave them. Looking at them playing on the floor that night I thought “are they going to grow up motherless?” THAT was most definitely not part of the plan. Would they remember me? Would they remember how much I loved them? How heart- achingly special they were to me? How would it be for them to grow up without that all-encompassing, unconditional love of a mother? Would I not get to see the adults they would turn into? The things they would achieve and the people they would become? How is it possible that I could love these two beings with every single inch of my soul; not to the moon and back, that is not enough. The love I, and many a parent, have for my children is limitless, it feels like the universe itself cannot contain it. Could it be that they would grow up without any sense of that? Just a fuzzy memory of a kiss before bedtime?
And yet, if anything has got me through this weird twilight zone detour from life as I knew it, it is them. Needing to keep it together and get up in the morning, and get dressed and put on my make up and take them to school. Make their lunch and their dinner and go to football practice. I can´t do all of those things all the time but I do them as much as I can and it is a lot. I have to be really unwell to not get up in the morning and see them off to school and I have been so blessed that it has not happened much. They are my everything and if anything can get us through this it is our love for them. I will do anything to keep things normal and happy.
We have explained I am sick. But they knew that already. We asked how much detail the older one wanted and gave it to him, explaining there was a lump blocking my intestines (insert quick anatomy lesson) and this made me feel sick and tired. We told the oldest it was called Cancer but he had never heard of it and was unbothered by the word. They asked if I would lose my hair like their grandmas. We didn´t know. They didn´t ask if I would die but at some point we have had the chat that some people die of Cancer, but many people don´t. That everyone is doing what they can to make it better.
Suddenly life became about hospital appointment after appointment, test after test. Everyone asked about my family history and suddenly it was so relevant. So obvious. And so we started the whole treatment process. Chemotherapy (in twice daily pill form) and radiotherapy to shrink the tumour. I felt relatively fine during this process. Tired, but fine. What helped more than anything is that it FELT curative. I had become really unwell by the time I was diagnosed. I lounged on the sofa more days than not, eating little and running to the toilet. As soon as I started treatment my symptoms started improving, I could tell the tumour was shrinking and everything was starting to work as it should. In a diagnosis where you are perfectly healthy and told you must start taking medicine that will make you unwell, that must be hard. But I was already unwell, the treatment was so obviously making me better. I completed treatment and before Christmas I had surgery, declared a success. All traces removed. I did have affected lymph nodes (don´t google statistics) so I am now on combined IV and pill chemotherapy. All going well by Easter I should be done. One more op to reverse the temporary ileostomy and home free. That is the plan. THAT IS THE PLAN AND I WON´T HEAR DIFFERENT.
The truth is I have wobbles, moments of doubt. I do worry it will come back. The risk of recurrence is high, apparently, although I have never asked for percentages or statistics and I have never been given them. They are meaningless anyway. Someone has to fall either side of the norm and as we have seen it can be me as much as the next person. Those couple of weeks we had to wait, to know if it was a localised tumour or if it had already spread throughout my body, were the worst, the lowest point. Friends tried to reassure me and I told them no, don´t tell me it can´t happen. The impossible has happened. Now nothing is impossible. I don´t need or want any sugar coating. Don´t try and distract me from the seriousness, it only serves to make you feel better (I didn´t say). I have no choice but to face it head on. That was the scariest time. But even in the midst of all of it there was this exquisite beauty and tenderness in my relationship with H. He had been so worried, so much more than me, but the moment we got the diagnosis it was like he pulled himself up and said NO. Just… NO. We are going to do this and I am here and I will be here and it is all going to be okay. I am with you. My (lack of) writing skills cannot possibly convey how tightly bound we felt as we stared down the barrel of the gun together.
So where are we now? I am being treated. And it is not so bad. It really isn´t. I feel in a way like I have faced one my greatest fears and so far I am facing up to it and coming out stronger. Who knows what will happen? Future possibilities don´t scare me like they did. If it comes back we will treat it again. And again. And as many times as we need to. And if I die, well I die. Everyone does. I can´t do anything about that. But I can live a healthy life, and love my children so much that no matter what happens they carry it with them forever. It isn´t brave. It isn´t inspiring. It is the only option. I didn´t rush into the clinic saying “NO, don´t give that cancer to that person, give it to ME”. I was handed shit on a plate and told to carry it or die. So I will carry it, held aloft, with a great big smile. And most people do, yes, even you probably would even though you think you would fall apart. We all think we would fall apart but the truth is it is not human nature to roll over and die, we fight to live, and live well. I can´t live my life worrying about it. I can live my life the best I can. Leaving memories for my children and carrying on trying to make the best future for all of us that I can. It is cheesy but I think we do live life a bit differently now, I think we always will.