As the biopsy results appointment drew near, things did not get any easier. I know several people with brain tumours. From close friends to friends of friends I’ve never actually met, each have different tumours and outcomes. Some good and some very bad. Because of our similar deficit, the one who played most on my mind was a painter and decorator who did our bedroom when we first moved to this house. Sensitively nicknamed Chemo Billy by the other builders, he’d arrive fresh from radiotherapy each day with half his head a vivid purple from the treatment. One day he started painting the window frame, but instead of the hand holding the paintbrush, it was his other hand that moved up and down. The poor bloke was way too ill to be working, but what other choice do the self employed have? One of the lads took him to hospital, and he died a few weeks later. Shamefully, we still have his pasting table in our garage. We were never quite sure how to give it back to his widow.
This was very much the kind of outcome I was expecting as we made our way to the hospital for the appointment. Sitting in the waiting area, my knee jiggled up and down uncontrollably with nerves. I tried to make small talk with the other people waiting, but didn’t have much to offer them.
Damian and Sarah showed us in to the appointment room. Unlike a normal hospital appointment room, which usually has a desk, straight backed chairs and an examination couch, this one had four armchairs arranged round a low coffee table. The whole set up screamed ‘this is where we tell you you’re going to die’. All that was missing was a box of hankies on the coffee table.
I sat down, and for the second time, tried not to puke in either Damian or Sarah’s lap. A got his notepad and pen out, ready to record what we’d be told in case it was too much to take in.
Damian took a deep breath.
So, as you know, we took a biopsy from your tumour, and we now have the results. It’s a Grade 2 tumour, called an Oligodendroglioma. Some people just call it an Oligo.
All the tension and air rushed out of my body*, and I kind of folded in half, making a noise like a set of bagpipes being thrown down the stairs in the process. (*TOP HALF of my body. The news did not make me fart in surprise, honestly.) Grade 2! Grade chuffing 2! I was so convinced it was a Grade 4, I hadn’t even dared hope for a Grade 3. Grade 2 was like winning the lottery. I turned to A and asked brightly if he’d got that written down. He was sat motionless with his pen poised over a blank page, looking like he’d just been slapped with a wet fish.
Your type of tumour is incurable, but it is….. manageable. It’s something you’ll have to live with. You never know, in 5-10 years, we might find a cure. I have to warn you that there is a genetic component to the tumour that will affect how it responds to treatment, but it will take another couple of weeks for those results to come through.
- You said ‘live’. LIVE! As in the opposite of die!
- You mentioned words like ‘years’. Years in which I will most likely continue to live. Surely people in this position do not bandy words like ‘years’ around to patients unless there’s a very real likelihood, probability, even of the patient living that long?
I didn’t really listen to any of the negative stuff. It didn’t matter. All I could hear was the word live.
This is a very slow growing type of tumour. You’ve likely had it for years. Had you had an MRI for any other reason, we’d have spotted it then.
This made sense. When I use my phone, my left hand always gets pins and needles, but my right hand never does. This has been happening for at least a couple of years. I just put this down to bad posture. My left ring and little finger sometimes get frozen position but soon click out again. It’s no bother, but I sometimes find it hard to grasp small things with those two fingers. I used to enjoy knitting but haven’t done it for two or three years. I did not consciously give it up because my left hand was getting pins and needles, but gradually it became less comfortable to do, so I did less of it until I no longer did it at all. None of these things had ever been elevated to the status of ‘symptom’ in my mind. I didn’t really even achieve the status of being a thing. Certainly not a thing I’d mention to anyone else, let alone visit a doctor about.
I told Damian about the pins and needles.
That’s reassuring. It’s most likely related to the tumour, and confirms that is really is growing very slowly. It just reached a size one day where it caused seizures.
What we would normally want to do is remove the tumour surgically, but it’s not a good idea in your case. It’s likely to do too much harm to the movement on your left side. We’d do an awake craniotomy, and the trouble is, when the patient is awake, we tend to be more conservative and stop at the first sign of trouble. We’d end up putting you through major surgery and removing nothing. So the next steps will be radiotherapy and maybe chemotherapy. Given your age and the position of the tumour we will treat aggressively to delay further symptoms as long as possible, but this tumour will still be there and it will recur at some point in the future, possibly at a higher grade. I’ll refer you to my colleague on Neuro Oncology, but it’ll be a couple of weeks before you see her. Everything will slow down now that we know your tumour is low grade. Right! That’s the last you’ll see of me. I’m just a humble surgeon.
Oh. Bye Damian. Thank you. Thank you so much.
You’ll be seeing LOADS of me though!
Grinned Sarah, handing over some oligodendroglioma specific information.
We shook hands with both of them (even though I wanted to hug Damian really, I sensed he wouldn’t like it) and then we literally floated out the door on a high of being NOT DEAD yet again. I just kept mumbling “Grade 2. Grade 2. Grade 2 though, A!”
I took A out for a slap up breakfast. That food and drink tasted so good. I realised I hadn’t really eaten in days. When we got home, there was a letter on the mat. I’d won £25 on the Premium Bonds. Today was made of 100% pure win.
Haha I think there must be something in the water – when I was diagnosed I came home to a £25 premium bond win. Evidently the world has its balances 😊 welcome to the oligo club 👍
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No way, what a coincidence! Cheers Chris x
I need to get me some premium bonds!
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I was thinking about you last night Ruthie, thinking that I’d not seen or heard from you… now I know why… so sorry to hear that you’ve been going through this – sending love, glad to see you are handling it in your usual stoic manner xx
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What a relief Ruth! I’m so happy for you and your family :-). Sending big hugs… and wondering will you continue writing in your inimitable style, about some of life’s other mysteries????
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Oh May, I’ve barely started! I’m having daily radiotherapy now, which is quite tiring, so the pace of posting will slow down a bit, but you’re all going to have to come with me on this whole journey, like it or not! 😉
Hi Ruth, I found your blog from a link on the Love for Scandi group on Facebook. You are so eloquent and funny and made me cry a bit too. Thanks for sharing all this with us xx
Thank you Emma! It’s therapy for me really. Getting it all out of my head and on to paper is helping me sleep at night!