… and yet somehow we’re kind of OK. It’s amazing how quickly one finds a new normal. However, the afternoon / evening of the diagnosis (September 11th 2013) was easily one of the cruddiest of my life. It was just before lunchtime at work, and I got an email from a 5K run I’d signed up for: “[Race Name] is Cancer’s Worst Nightmare!!” it exclaimed. I scoffed at it, finding the antagonistic anthropomorphism mildly patronising.
Then my stomach dropped – I suddenly remembered Tom had been at his appointment for an hour and a half now… from that moment on, I must have checked my phone every 20 seconds for the next 20 minutes, convinced of bad news and almost trying to force it to come through just so the waiting could be over. The word “cancer” was blaring at me repeatedly in my mind, and it took most of my effort to stop myself from panicking.
Apart from the unexpectedly long appointment, I didn’t necessarily have reason to believe it was the cancer my mind had decided it was which is why I hadn’t come with him to the appointment, but perhaps it should have been obvious. Tom’s had lumps on the side of his neck for maybe a year which grew and contracted in cycles, but they were still reasonably compact and seemed to develop at the same time as a set of new hayfever-like allergies (which are still undetermined and may indeed be linked to the cancer although this is pure speculation) randomly appeared.
For this reason, the doctors he saw about it didn’t think it was anything more than an over-acting immune system and therefore nothing to worry about. It was only two months ago that they simultaneously started growing and didn’t go down, along with a new one on his armpit. He went back to the doctor after following NHS guidelines about timing and this time there was immediate concern. He was sent straight off to the BRI for blood tests and a chest X-ray.
An ultrasound was also requested, but this department seemed to be dragging their heels a bit, so the original GP made a decision – although he didn’t think it was cancer, he was going to put Tom in as an oncology patient in order to speed up the process and get the ultrasound appointment. Thank goodness for that decision. Since then, the process sped up considerably with ultrasound, more blood tests and a biopsy.
All this was running through my mind, as well as far darker thoughts, when the call came “Hi Em, can you meet me outside”. Oh god. We sat down on the isolated patio outside my work and he came out and said it. “I’ve got Hodgkin’s lymphoma”. I immediately blurted out the first and almost the only fact I knew about it. “That’s one of the most curable ones”. Ones meaning cancers. My amazing, young, strong boyfriend has cancer.
We hugged and we cried and didn’t care about the few people walking past, but then we knew we had to move forward. More people had to know. People from work, friends and family.
Telling someone else for the first time was actually a lot harder than hearing it. When you hear it, you can almost pretend it’s not real. When you form the words yourself, and when they come out of your own mouth in your own voice, they are utterly, inescapably real.
So what do you do after you find out your life for the next year or more has inexorably changed for the worse? Well what we did was go to Sainsbury’s. It was Tom’s turn to cook for his housemates, and he’d be damned if something like cancer would get in the way of stew night! I knew immediately that work for the day was just out of the question and I count myself very lucky to have an understanding boss who was OK with my decision to write off the afternoon. Later on, Diablo III provided a much needed refuge – busying ourselves with questing and looting together to just take your mind out of our situation and out of ourselves for a bit. Many tears, a rather scrummy stew and the Great British Bake-off also featured.
I really did not want to let him out of my sight at the end of the evening but I knew I had to go home, so we could deal with this in our own thoughts after sharing so many of our own. I was unsure about going to work the next day but it was definitely a good decision to go – a busy mind can be a happier mind. Besides if Tom was going, I damn well wasn’t going to let him show me up. 😛
Writing this on the 19th September, we’re in the middle of a battery of tests and procedures to collate all the evidence possible before treatment – bone marrow samples, sperm donation in case of infertility and PET scans to name a few. His chemo starts on the 4th of October and to be honest it’s nice to have a date set. I know I’m on a relative high right now, and I know he’s going to get worse before he gets better, but chemo is a purging process, and purging is rarely pleasant.
I’ll say now that I don’t want Memetic Drift to turn into a living-with-cancer blog. I feel the need to write one, I’ll start a new one. But writing about anything other than Hodgkin’s lymphoma at this point would make me feel like I was doing a massive disservice to the one thing dominating my thoughts right now.
Tom’s diagnosis was only 100% confirmed yesterday, which was when we decided to “go Facebook official” with the news, and personally I found that really helpful – no more secrets. I haven’t really looked into the science of Hodgkin’s disease for fear of what I might find, but I feel emotionally ready to tackle it now. I want to understand.
There are two groups of friends I’d like to thank: 1) those who spoke to us or sent messages of support, advice and encouragement and 2) those who briefly acknowledged the cancer and then continued the conversation as if nothing had changed. The variety is very much appreciated!
Of course Tom has my utmost respect for the way he’s taken this challenge on, my thanks for letting me talk about this online, and my love forever. If you need evidence of his amazing attitude, look no further than this FAQ he wrote on his Facebook as part of his diagnosis announcement:
1) Are you going to die?
Yes, I am not immortal, but it won’t be of this and it won’t be soon
2) What’s going to happen to you?
Well, I have quite a few tests coming up in the next few days, but the big day is October the 4th where I will have my first chemo treatment. The chemo will go on for 6 months, but that may change depending on how I respond
3) October the 4th, isn’t that near your birthday?
Sort of, my birthday is October the 12th, but I’m not sure how I’m going to be, we’ll just have to see how it goes
4) What can I do to help?
In most cases exactly what you are currently doing. If you wish to chat to me about this then please just let me know. Afterwards I really don’t want to make this the only thing I talk about, so just treat me the same you always have. Of course some people may want more information and for those people if you send me an email I’ll let you know how things are going. Be warned though, there might not be a lot of information to begin with
5) What stage are you at?
So we have caught it at stage 3
6) Where can I find more information about what you have?
This the best place. http://www.lymphomas.org.uk/
7) Can I give you a hug?
For you, course
8) By “liking” this status will I be liking cancer or liking your attitude?
Your call, I’ll assume you like the attitude.