That interesting post I mentioned…

I didn’t really expect to be writing on the blog today to be honest. Today was supposed to go something like this…

Wake up, and have a lazy morning. Then in the afternoon Sally and Saskia were due to go to a little ante-natal group party, while I had a quiet afternoon at home, incorporating a lesson from a photographer in how to post process my photos on the computer. So while a nice day, not exactly ‘interesting blog post’ material.

What actually happened bore very little resemblance to that. But before I go into detail I have to explain a bit of background context – some of you will know this already, some not. And I’m not really sure how to put it, so I’ll just say it – the cancer has spread to my brain (boo hiss!).

I actually found this out a while ago, just before I started the blog. In my first post, when I mentioned that I couldn’t go on the second clinical trial ‘due to the location of my cancer’… well that was why. Most clinical trials prohibit entry to patients with brain metastases. I don’t really remember why, and probably don’t want to know. But by agreeing to go on that trial I consented to having a CT scan of my brain, which showed multiple metastases (albeit small).

Obviously this was very hard to hear, and for one reason or another I didn’t really feel ready to disclose this news openly on the blog at that point in time. I’m not really sure why – perhaps I needed to come to terms with it myself first; or perhaps I just felt that this, on top of all the other news, was just too depressing a way to start the blog. Also, at that point I was asymptomatic (i.e. had no physical symptoms of the brain mets). So I decided to hold on to that news for the time being.

Well, as of today, I am no longer asymptomatic – what actually happened today was this…

Woke up at about 6am. By about 6:30ish I had developed a crushing headache on the left side of my head, like nothing I have ever experienced before (although I rarely suffer from headaches). I am already on paracetamol for my back pain, so couldn’t take any more of that – but I remembered that I had some codeine in a drawer, prescribed by my GP a while back in case I had any more attacks of stomach pain (mentioned in my first post). So I took the maximum dose of codeine I could, led back down, closed my eyes, and just waited for it to take effect. Which eventually, it did. After an hour or two the pain started to subside, and I think I dozed for a bit.

When I woke up and tried to get out of bed, I realised that something else was wrong – my vision wasn’t quite right. After much waving of my hands in front of my face I established that I was missing much of the peripheral vision in my right eye. If I held my right hand directly ahead of me, looked at it, and then moved my hand to the right (whilst still looking directly ahead), I only had to move my hand 10 to 20 degrees before it disappeared entirely from view. The same experiment with my left eye and hand showed I could still see my hand in my vision when it was out at 90 degrees, parallel with my shoulder.

I knew at this point that the brain mets were now playing up, and this wasn’t just a headache. We had been told that they could cause swelling and inflammation in the brain, resulting in headaches, vision problems, and possibly causing me to have a fit (an experience I am really not looking forward to). So we decided to phone the doctor at the Royal Marsden. What ensued was a flurry of calls between the Royal Marsden, my GP surgery, and Canterbury Hospital.

I was immediately prescribed steroids to try and reduce any swelling and inflammation. The Marsden also wanted an urgent CT scan of my head, but were happy for me to have this locally, rather than make another trip into London. A few more phone calls later (and a bit of clarification as to whether urgent meant ‘within a week’ or ‘today’) and I was called into Canterbury Hospital at half an hours notice for a CT scan of my head.

So Saskia was collected and sent on her way to her party as a temporary orphan, while Sally and I were kindly driven by a friend (also called Sally) to Canterbury for my scan. After a bit of waiting around, my scan was completed and we were driven home.

We don’t yet have any news on the scan results – they were being sent up to the Royal Marsden, and we are expecting to hear tomorrow. Assuming the scan shows just some swelling, I continue taking the steroids. If it shows ‘anything else’, we take a ‘different route’. I’m not really sure what ‘anything else’ and ‘different route’ involve at the moment.

So there we go. I’m currently sat on the bed, resting, typing, and quaffing steroids, paracetamol and codeine. The headache has mostly gone (or is suppressed by the painkillers), but there is a lingering sense of it. My vision is still not really improved – so far today I have walked into a hospital trolley, our sloping bedroom ceiling, and a door (repeatedly). Also I have stepped on the cat. It really is amazing how inconvenient it is – I keep losing items that are placed slightly to my right, because they just don’t appear in my field of vision.

I am sincerely hoping that I wake up in the morning able to see properly again, and preferably without a skull that feels like it wants to explode – I can do without all that.

Before I finish, I want to write a bit about the decision of whether or not to have the brain scan required for the clinical trial – just for the benefit of anyone reading this who might ever have to make a similar decision. When weighing up the pros and cons of the trial, we discussed this a lot. The Royal Marsden tend to adopt a policy (for melanoma at least) of not scanning the brain unless a patient actually shows symptoms of brain mets (even though melanoma commonly spreads to the brain). Which might sound strange, but everything they do is based on sound logic and reason. I’m not going to try and explain that logic or reason, as I don’t consider myself aware enough and don’t want to risk misrepresenting them.

We questioned whether or not we wanted to know if the cancer was in the brain and to what extent – were we setting ourselves up for another fall? What could be done if it was found? We were warned that if the scan showed anything, I would no longer legally be able to drive. In the end we decided that the clinical trial was ‘the fighters choice’, and therefore accepted the brain scan as part and parcel of the entry requirements.

As it turned out we did get bad news – and it was tough to deal with. However, I am glad we made the decision that we did. Today has been a crap day, that’s for sure – but at least we knew it could be coming, and so were slightly prepared for it. We had already dealt with the news, so today has just involved dealing with symptoms. I cannot imagine how much worse today would have been if we’d had to deal with the realisation that the cancer was in my brain, at the same time as having to deal with the first arrival of symptoms. We knew very early what was up, and were able to act quickly – as were the various medical professionals involved. Another advantage is that the Marsden have a scan from a month ago to compare this latest scan against.

That doesn’t mean this decision would be right for everyone – we’re all different. But I just wanted to offer an insight into our particular experience – an insight which would have been useful to us back when making the decision ourselves.

Finally, some thank yous; to all the medical staff involved in organising and carrying out my treatment today; to Sally for driving us to and from the hospital and remaining on standby should we have needed to go to London; Caroline for being on Saskia standby this morning; to Janine for collecting Saskia, and all the NCT girls for looking after her; and to my Mum for driving up here at short notice to be on standby should we need to go to London tomorrow.

Right, so there we are. I’ve learnt an important lesson today – never promise to make your next post interesting, because you might get what you ask for. In fact I hope my next post is complete and utter tedium – perhaps about the finer points of how libraries organise their books on shelves, and the intricacies of those little labels with all the numbers and decimal places on the spines of the books.

Sorry for any typos or errors – but as I can only half see, I’m sure you will let me off.

P.S. In the midst of our flurry of phone calls this morning, Sally’s phone died (awesome timing!) – she could see she had received some texts, but could not read them. Subsequently this afternoon it appears to have given up the ghost entirely. So if anyone wants to contact Sally please be aware of that. Currently via e-mail, landline, or me are the best options. I will post again when we have it sorted.

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15 Comments

Filed under Battle with Melanoma

15 responses to “That interesting post I mentioned…

  1. Hi Ben, we don’t know each other, (I came across your blog via Kat on facebook (dog show acquaintances!)), but I just wanted to wish you luck with your treatment and let you know I think the blog is a great idea, you write very well and I’ll be following it, keeping my fingers crossed for a speedy return to health for you. Emily x

  2. Your bravery pierces my heart and cracks it wide open. Thank you Ben, for this sacred privilege of sharing in your experience. Thank you for writing regardless of what you were experiencing. Love and blessings, Steph

  3. Anna

    Ben I can be on standby in London at any time. If you need somewhere to stay, to babysit or to just come to the marsden and drink too much coffee and make bad jokes. Anytime. I can be there within twenty minutes. And the benefits of doing stupid research is that I can devise my own schedule. Obviously that also applies if you need help nearer home but it sounds like you already have wonderful friends there. All my love and strength to all three of you.

  4. Dave A

    GOOD NEWS
    It’s 11min past midnight, and I’ve just read yesterday’s post about sight problems etc…good news…what good news…well it’s tomorrow already…yesterday is no more and today has got off to a good start. If you’ve ballsed it up already in just 14mins that’s your own fault!!
    Hope today goes better, try not to stand on the cat again (that bit did make me laugh) you know ‘she’ dosen’t like it and you don’t want to go to hospital for a scratch like the past time she hospitalised someone after a shocking claw attack!!
    Well 18mins into today and it’s time to go…please do try and make today less eventful, I’m looking forward to hearing your views on ISBN book codes.
    Love to all.
    X

  5. Ron and Nancy

    Thanks for the update on the blog, Ben. What a day you and Sally have had! We admire you and thank you for sending your message.
    Wish we lived closer to be of some help.
    Our love and positive thoughts go out to you, Sally and Saskia.
    Ron and Nancy
    xoxoxo

  6. Becci

    Wow, what can I say – a true inspiration and I feel privliged to share this journey with you from the other side of the world. You are consistently making me cry with sorrow and laugh with incredible delight at some of your ramblings. Lots of love and respect brother, from Australia.

  7. Andy

    Hey Dude. That sounds one scary day! I hope you and pickle are doing better today. We’re always here if you need a chat or somewhere to stop over. X

  8. Dad

    Hello Ben
    As always a well written blog…you should have been a writer. I hope today goes better for you. Pasties on order and catch up with a visit ..together with pasties. Love to you and Sally from us all and good luck to pickle x

  9. Vicky Cook

    Hey Ben – I’m sending round the RSPCA to collect Pickle from you and move him in with me for safe keeping…..poor cat ! Hope your vision is better today and the headache has gone. If it helps I have a slight “headache” this morning but mine is self induced ! I’ve sent you a text but am hedging my bets and writing on here let me know what network Sally is on and I will try my best to russle up a mobile for her to borrow I can drop it round later. Hopefully see you all soon x

  10. Ben

    Thanks everyone for your comments. Just to let you all know I am ok – my vision is still not quite right, but hopefully will return to normal soon. No head pains though, which is good. Just resting for now.

  11. Claire & Phil Leslie

    Hi Ben, so sorry to hear about yesterday – what a horrible day. I’m glad you’re feeling a bit better today. I can’t believe with all that was going on you still managed to write a great blog and include info that will help others – we’re such a proud Auntie and Uncle, much love xxxx

  12. Dan M

    Hi Ben, what a day! Glad you’re feeling ok. Hope you get some inane drudgery this weekend and the vision goes back to 20-20. Love to Sally and Saskia – if the cat needs a break from the abuse feel free to come on round and step on me.
    Dan

  13. Tanya

    Hey Ben, any news on the scan then?
    Glad the head pains have stopped.
    Love to all. Hope to catch up soon. xx

  14. Betty Jakeways

    Hello Ben & Sal. Surprise surorise its Aunty Betty (Ivan’s sister) Never actually met you Ben and havn’t seen Sal for quite a while but am unable to keep away after reading all about you Ben. You bring tears to my eyes but I really hope you can keep thinking positive thoughts. I’ve first hand experience of cancer in caring for someone very near and dear and I empathise with you both. Treat each day as a blessing and a bonus. You are very well blessed having so many friends around you. I’ll keep watching and hope to make contact again. Lots o luv to you Ben, Sally ad Saskia (she’s cute!!!) Aunty Bet

  15. John and June Edge

    Hi Ben, Sally and cute Saskia
    We read your blog so sorry to hear about your news, we wish you all the very best, and our best regards to Sally and Saskia John and June x

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