Firstly, sorry it’s taken me a couple of days to write – things have been a little up and down since my last post.
So yesterday morning I woke up with no improvement in my vision, but thankfully no head pain. I spent most of the morning in bed, dozing and watching the F1 practice sessions. The vision problems made being up and about so awkward and disorientating, that it just seemed easier to stay lying down in one place. Dosing myself up to the maximum on codeine also probably played a part in my inertia.
Then mid-afternoon we got the call from the Marsden with my scan results. As has been fairly typical of my recent ‘result getting’, they weren’t what we would have wanted to hear – which would have been something like this…
“Good news, the cancer’s gone!! Your headache was just cancer withdrawal symptoms. You’ll be over that in a few days, then back to work with you on Monday. Hurrah!!”
Instead, the scan showed that the disease in the brain had unfortunately progressed.
While not great news, we knew this would probably be coming at some point – the reason being something known as the blood-brain barrier. Now I won’t pretend to have a detailed understanding of how this works, but essentially it seems to be there to protect the brain from certain things in the blood (bacterial infections for example). So obviously it evolved for a reason, and has a useful purpose. However, in my case I would be grateful if it would take a little mini-break, and just sod off for a few months – because it also happens to be preventing my chemotherapy treatment from reaching the brain metastases.
This is one of the reasons that the news that the cancer had spread to the brain was such a blow. It meant fighting the battle on two fronts – the brain, and the rest of me. Each front requires a different treatment, each with its own side effects – and usually these treatments are not given at the same time, so as to spare the patient the cumulative side effects of both treatments together. Now I’m not a military strategist (except on the Xbox now and then) but it seemed to me that by fighting on two fronts, and only allowing yourself to fight one front at a time, you are putting yourself at a disadvantage.
But again, this is what the Marsden do – and they have their reasons (like always, based on evidence and logic). And I’m sure that to compare fighting cancer to playing a game of ‘Command and Conquer’ is a gross oversimplification on my part!
So anyway, back when the brain mets were discovered, as I was asymptomatic the doctors decided to focus on treating the rest of the disease, and to just keep an eye on the brain for the time being. In two weeks time from now (at the end of my second chemo cycle) I was due to have another scan, and they would weigh up what was going on where, and what to do next.
The events of the last few days have changed all that. The plan now is that next week I begin a course of brain radiotherapy. Unfortunately due to the spread and position of the brain mets, targeted radiotherapy is not currently an option. So I am going in for ‘whole brain’ radiotherapy – which is a prospect I find a little daunting to be honest. Most of my life I have become familiar with the idea that radiation and brains are best kept separate (primarily based on a passion for submarine films, usually involving nuclear reactor leaks of some sort). So I am a little nervous.
It sounds like the treatment is likely to be given over a course of five days, and will come with side effects including feeling wiped out, nausea, skin problems, and hair loss. Which will be interesting – I guess I will finally start to look like a cancer patient (at least I might then feel able to sit in the ‘priority for people who can’t stand’ seat on the tube without people thinking I am a fraud).
So that news came as a bit of a blow yesterday – although more due to timing than anything. I had been hoping to make it through the next couple of weeks until the next scan before we started having to think about all this. But it seems cancer was not paying attention to the schedule (I think I’ll have to have a quiet word).
Getting back to yesterday afternoon then – almost exactly as I got that news, I felt the pressure in my head coming on again – perhaps psychosomatic, perhaps coincidence, or perhaps because I had got all cocky and halved my dose of codeine. It wasn’t the crushing headache of the day before, but I feared that was where it was headed – so I spent most of the remainder of the day trying to lie as still and quietly as possible, to try and keep it under control (not helped by a screaming, teething baby who didn’t want to go to sleep).
And that is exactly how I have spent most of today – lying in bed resting, watching F1 again, and willing the pressure in my head to subside. Which, around mid-afternoon, it finally did – and I felt well enough to come downstairs, eat dinner, and write this post.
I’m currently still on a whole cocktail of drugs – steroids to reduce inflammation in the brain, paracetamol, codeine, etc. There is still no real improvement in my vision, which was starting to worry me. Although we spoke to our local hospice today (who specialise in pain management and symptom control), and they advised that it could be Sunday or Monday before the steroids really start to kick in. Hopefully the subsidence in pressure this afternoon is the start of that, and my vision will return soon. They also gave me some liquid morphine, in case I get more pain that the codeine won’t control. It makes me feel safer to know I have the next step in pain control in the house ready, just in case I need it – rather than needing it in the middle of the night and not being able to get it.
So there we go. I also want to say a massive thank you for all the messages I have received over the last few days – via the blog, e-mail, text, Facebook, etc. I am sorry I haven’t been replying, but the headaches and vision problems have left me limited for time, energy and typing accuracy (especially on a smartphone keypad!). But the messages I received all meant a lot, so thank you. I will try to reply soon.
Wow – I just realised that after writing the title of this post with the best of intentions, I got distracted by all this cancer stuff, and haven’t written anything at all about library book filing systems. It’s pretty late, and I’m quite tired now, so I think I will have to give it a miss. A big sorry to anyone who waded through all this cancer stuff, only to feel misled and disappointed by the content of this post.
I’ll try and make it up to you tomorrow.
14 responses to “About library books then…”
I hope you don’t mind me reading your blog, but I got your link from my cousin David. Can I introduce myself – my name is Pauline and I am Sally’s cousin. She was my bridesmaid almost 32 years ago, my youngest bridesmaid and she was such a little sweetie. Your father-in-law, Ivan, is my Mum’s youngest brother. I have started reading your past blogs and to be honest you are an inspiration. I cannot begin to comprehend what you and Sally are going through but I love your positive attitude – stick with it Ben. Keep focused and bless you for letting me share your blog.
Good Morning Ben,
You ARE an inspiration. How do you keep your sense of humour in such difficult circumstances.
By the way, you probably don’t know this, but in a previous life your dear mother in law was a librarian. So what a wonderful time we are going to have together!
Dear Ben, thank you for your latest posts. I can only echo comments from others – you are a total inspiration, so honest and brave and with overwhelming positivity. We are very sorry to hear the latest turn of events and will be thinking of you this week with your new treatment programme. Please let us know if we can do anything for you guys this week. Sending you lots of love and positive vibes, The Pommer Family x x x P.S. I’m on the edge of my seating awaiting the Dewey decimal system post 😉
Hi Ben and Sally, I was rather looking forward to an understaning of the library system and also had another topic in mind for you to tackle – the inside of a tennis ball, one I had to tackle when put into detention for speaking out to a teacher – those were the days 🙂 I’m here if there is anything you need, anything at all. Love to you all and big big hugs xxxxx Jacqui
Hi Jax. Sorry I missed your call yesterday – was in the midst of grappling Saskia to the changing table! I’ve got a temporary phone now so I can text but have none of my contacts. Could you send me a text so I’ve got your number? xx PS – Sas is looking super-cute in one of the dresses you gave her (the lime green one with pink petals – plus matching knickers!))
Mate you are having some tough time! You might be bald soon, but I am sure it won’t stop us to love you – just cannot help it really (i guess something about your hairy chest and neck….). I will ask Justin to give you some inside of what it is like to be bald….
If you have some time and some funny mood we would like some more photos of your family and Saskia!!!
Always with you!
Justin & Aigul
Keep strong Ben, we are all rooting for you, please let us know if you need help with saskia during the week at all. Love to you all xxx
Ben, you are so incredibly brave and like I said in a previous post, you are a real inspiration to us all. Regardless of what is going on / how you are feeling, you still shine through with an amazing sense of humour. You are always in our thoughts and I wish you the best of luck with your treatment this week, sending positive vibes your way xx
I am really looking forward to that library update! However, I have been slightly distracted and intrigued by the comment from Jacqui – does it get more interesting than the inside of a tennis ball!
Send my love to Sally and Saskia and remember, if there is anything I can do to help then I am only a phonecall away.
I have not seen your blogs for a few days and so was terribly sad to read your latest news. I can’t say how much I admire the way you’re dealing with your situation and feel very privileged to be able to read such intimate and informative accounts of your struggle to deal with this disease. My thoughts are with you and with your wonderful, supportive family.
Pauline (your Mum’s friend)
Ps I have never seen such a beautiful baby!
Dear Ben – just wanted to wish you best of luck with the next stage of your treatment. It sounds like a really tough time. We’re sending lots of love and positive vibes your way. Kate, Barny & Ralph x
Dear Ben, good luck for your treatment next week, sending lots of love and positive vibes!!! xxx
It’s amazing to hear from you after so many years (I dread to think how many!). I never imagined the blog would put me back in touch with long lost Austins! I hope you’re all really well.
It’s great to know that you’re reading the blog and sending your support – it means so much.
Please give my love to all your family.
I want to say something fun and slick to make you laugh, but I’m so sorry I can’t think of anything….. all I can say is what an inspiration….. I’m not religious at all but I am praying sincerley for you, Sally & Saskia and I will keep on praying for you….
Have read your inspirational blog, and seen the pictures of your beautiful family, after hearing of your blog from very proud grandparents, Chris & Ivan, with whom we are friends. Hello to Sally too after many years!! How gorgeous and full of fun Saskia is! ( we are “grandparents in waiting”, our 1st grandchild is due in July).
We are thinking of you all each day as you go forward with your treatment Ben.
Alan & Nella Newton