Apologies I haven’t written for a while. After a fairly active period on the blog with all the brain / radiotherapy news, I decided for my ‘week off’ treatment that I would focus my energies elsewhere for a bit of variation (more on that later). And since Thursday I just had to take a break from thinking about cancer and treatments for a few days.
Obviously most of you will have seen Sally’s post on Thursday – yet again another disappointing trip to the Royal Marsden. Since my ‘relapse’ I am yet to walk out of those doors having heard the ‘good’ news option – it always seems to be the ‘bad’ news. Next time I am considering just staying at home, assuming it’s bad news, and saving ourselves fifty pounds on train fare and a whole lot of waiting around.
In truth, while obviously we were hoping for the best, it was not a complete surprise that the chemotherapy was not deemed to be effective. The doctors at the Marsden typically state the positive response rate to be only ten to fifteen percent of patients, and then usually only for a limited time.
What was unfortunate, and made the news more difficult to take, was a bit of a mix up prior to seeing the doctor. I had a provisional appointment booked for Friday to have the chemotherapy if we were going ahead. While waiting to see the doctor I was approached by a nurse, told I was having treatment Friday, handed two blood forms saying ‘pre-chemo’, and told to go downstairs for a blood test.
“Result!” I thought, “that means the chemo was working, doing something at least”.
For the first time in a while I thought I would be leaving the hospital with some positive news, and found myself in the seemingly odd position of being ecstatic about the prospect of receiving chemotherapy.
Then suddenly it dawned on me that maybe the doctors hadn’t reviewed my scans yet, and the nurse had just acted on the basis of my provisional appointment. I quickly tried to temper my excitement, and decided I wouldn’t believe it until I heard it from the doctor. But it was difficult not to have some level of hope – thinking to myself “I’m sure they would have checked everything properly”.
Going through countless scans for cancer and waiting for results have generally been the most harrowing times of my life – it’s pretty indescribable. After a scan I find myself analysing in great detail the attitude of the staff towards me for signs of pity; in waiting rooms I wonder if I am being left until last because they need a senior doctor to break bad news to me; and so on.
What I’m trying to get across is that when one spends so much time trying to read things into things that don’t actually mean anything, it’s very hard not to get excited when someone explicitly says to you, “you are having treatment tomorrow”.
Anyway, as you can probably guess it was just as well I did at least partially prepare myself for bad news to follow – as it turned out I wasn’t to have the chemo after all, and had therefore had yet another needle stuck in my hand for no reason whatsoever (much of the time I feel like a pincushion nowadays).
So that wasn’t the best start to my chat with the doctor – I was obviously disappointed, and angry that such a mix up had been allowed to happen in the first place. But these things happen unfortunately.
Putting that incident aside, what they told us was this – the disease has progressed despite the chemotherapy. Not dramatically so, but enough to not continue with that particular treatment. Which leaves us with two options:
1 – ‘Symptom management’ – two words no patient wants to hear.
2 – Treatment with Ipilimumab (or ‘Ipi’) – a new-ish drug, and what is known as a ‘second line’ treatment (the chemotherapy being a ‘first line’ treatment).
We have been aware of Ipi as a second line treatment option for a while, and it has generally been accepted that if the chemo didn’t work then Ipi was the automatic next step. What took us by surprise in Thursday’s appointment was that I was strongly advised away from this option, and towards the ‘symptom management’ option.
Ipi works by boosting the immune system, to try to help it to fight the cancer more effectively. Now like most anti-cancer drugs it has side effects, and (like most drugs aimed at fighting melanoma) not particularly high response rates. One of the side effects of Ipi is colitis – which I have already, due most likely to an overactive immune system (hence I am on immuno-suppressive medication to manage the colitis). So in a nutshell, the position of the doctor we saw last week is that Ipi represents too great a risk to my health and ‘quality of life’, given my existing colitis, for what he sees as the questionable chance that it will be effective.
Which was, as you can probably imagine, all pretty uninspiring to hear – and leaves us with an awful lot to think about. I find myself in a catch twenty-two situation – with one medical condition that requires suppressing the immune system, and another for which we want to boost it.
In truth, again perhaps we should not have been entirely surprised at the negativity over the Ipi route – I have been aware that the doctor we saw has had reservations about Ipi as a potential treatment option for me from the very beginning. However, we have had more positive discussions regarding Ipi with the other doctor who jointly leads the melanoma clinic – his take last time we spoke was that colitis was the lesser of two evils, and we would have to take the risk and manage any colitis flare up. Unfortunately my situation has changed since that conversation – at the time we didn’t know that the cancer had spread to the brain. So it could be that his opinion would now fall in line with the doctor we saw last week, and he would warn me away from Ipi too. But either way we would obviously like to hear what he has to say – unfortunately he won’t be available to discuss this with us until next week (having had the nerve to go on holiday at such a critical time in my treatment!).
However, it doesn’t look like this will hold us up significantly if we do decide to go for Ipi. It isn’t yet (as I understand it) freely available on the NHS as a licensed treatment – so the Marsden have to make an application for funding, which can take two to three weeks. They have been kind enough to initiate that process immediately, to minimise any hold up should we decide to go for it. Which means that we have time to take over our decision, and can meet with the other doctor once he is back, all within that two to three week window.
So there you go – that’s where we are right now. It was obviously a disappointing meeting – but yet again we have picked ourselves up, as we are becoming very adept at doing (thanks to plenty of ‘opportunities’ to practice!). I’d be lying if I said there hadn’t been some hard moments over the past few days, but we decided to put starting the Ipi research and decision on hold for a few days (given the lack of any immediate time pressure), and throw ourselves into positive and enjoyable things to keep us in good spirits – and I would say we have bounced back pretty quickly.
What I have said before in this blog still stands – we are not giving up, ever!!! There is always hope, and dwelling on negatives and what might happen before it does happen will only compound matters. Sally and I promised each other at the beginning of this that we would just deal with what is immediately in front of us, and that is what we’re doing.
Also, I don’t want to say too much about it at this point in time, but there is a another avenue we are exploring. It might come to nothing, but it’s nice at this point in time to feel we have other options.
And in a way, this appointment on Thursday was perhaps the kick up the arse that we needed to make some other big lifestyle changes to give myself the best chance of beating this (again, more on that later).
So that’s all I’m going to write for now – I had intended to write plenty more, about what we’ve been keeping ourselves with busy since my last post, the above mentioned lifestyle changes, my general condition (not bad, just so you know), etc. But I have already written nearly fifteen-hundred words, have run out of time for today, and want to get this post out there quickly so you know we are ok, and I’m not spending my time trying to throw myself under buses or down any wells.
As always, thanks to everyone for their messages of support over the past few days – it really does make a massive difference.
I will post again soon.
9 responses to “Long time, no write…”
Thanks for the update Ben, we have been thinking of you all and wondering how you are doing. Really glad to hear you sounding so strong and positive again. You truly are a wonder. Big hug, Janine x x
Amazing, you are truly amazing…. I am lost for words
Just remember my offer still stands… you can have my brain… if we can find it… all seriously I wish I could give you my brain, I really do, you deserve it so much.
Just remember Matthew and I are always here to help in any way possible.
Take care and loads of love to you, Sally & Saskia
I couldn’t be more proud of you – I am (and have always been) truly fortunate to have such an amazing son. And YES we are not giving up EVER ! You and Sally are an inspirational couple – love you both and that adorable baby Saskia !
All my love, always, Mum xxx
We are Not giving up, ever! Yes, thats exactly the right way to tackle these un-welcome visitors.. im pleased there are other options.. I wonder if there are any different options here in the usa? Something to think about eh? We are all fighting with you and think of you daily in our prays… There is this place called Optimum Health Institute. You can sign up for there News letter and ask questions. If you click on the Body-mind-spirit program you can read about guests testimonials. Maybe you can learn something from this… check out there websitehttp://www.optimumhealth.org/…
You need all the support you can get and i will continue thinking and asking questions over here… but please check out this Optimum Health Institute.. I have had alot of friends stay at this place before surgery, gout problems, and many other things…
talk soon, your over seas connection. 🙂
Well ur something special, lots of love and we are here for u always. Xxx
Dude, you’ve got balls of steel, and whatever else is going on inside your body, there ain’t nothing going to change that! Love love love Fran x x x
Wow! Once again our amazing nephew has picked himself up, dusted himself off ready to continue the fight. We’re all totally with you in this and I’m a true believer that faith and positivity does amazing things! All our love to you all xxxx
What a perfect description of the way we all feel while we are sitting in a hospital waiting room or returning to our GP for test results . The mind plays amazing tricks and really runs riot. But you have been subjected to this roller coaster so many times and with such high stakes. I’m sure the fact that you are able to analyse this objectively, helps keep the gremlins at bay and this emotional torture under control.
But as you say, all too often your worst fears have been realised and now you are faced with such huge and truly life changing decisions. Over the last few months we have begun to appreciate what great courage and strength of character you have . Still waters run deep!
The evidence suggests that you WILL always be one step ahead of this monster.
All our love xxx
Lovely of you to have posted Ben, but I’m guessing you and Sally are just plain lovely! Your strength is shinning through =)