It’s 4.a.m., and I can’t sleep. All is completely silent, with the exception of the occasional ‘sleep-whimper’ from Saskia’s room. Poor little thing currently has probable conjunctivitis in both eyes, and a chest infection to boot. She has some antibiotics which will hopefully sort her out.
Being awake in the early hours is fairly common for me these days. So this time I have decided to do something productive with this time and write an update for the blog.
This last week has been another busy one, with three trips to London (vaccine, clinic appointment, chemo). So I’m looking forward to a rest day tomorrow (well, technically today I guess).
All the appointments went pretty much as planned. It looks like I am to have another course of brain radiotherapy, hopefully in the next couple of weeks. And apparently the vaccine should be starting to kick in about now (usually after the third dose).
So there’s plenty going on in terms of treatments – it feels like we are throwing everything at it. Next, the kitchen sink.
I am pleased about that though. In cancer treatment there is this trade off between the benefits of a treatment and the impact of it’s side effects on the patient’s ‘quality of life’.
This is a choice that I strongly believe should lie largely in the hands of the patient. This is why I am disappointed in the Royal Marsden – they effectively made that decision for me, telling me to go home for ‘symptom management’, based on their rigid ‘flow chart’ style of treatment options (which for some reason also excluded some perfectly orthodox treatments from which I am now benefiting).
I wasn’t ready for ‘symptom management’. I’m young(ish), and otherwise relatively healthy(ish), and seem to tolerate the treatments fairly well. And most importantly I have an awesome little girl, fantastic wife, and an amazing family to fight for.
So I am grateful to my new consultant for giving me the opportunity to be able to continue to fight this disease. I won’t lie, it is hard, and who knows, one day I might tire of all the treatments and side effects, but I’m not there yet – there’s still the kitchen sink in reserve.
In myself I am feeling ok at the moment. I have little in the way of pain these days, that seems very well controlled.
The draining of nearly five litres of fluid from my right lung seems to have had massive benefit. I can still get out of puff, but nowhere near to the same extent as beforehand, and recovery time to a normal breathing rate is much improved.
I would say fatigue and weak legs are my biggest problems. Fatigue is hardly a surprise after six cycles of chemo, and the muscle wastage in the legs we know is the steroids. I’m ok walking on the flat, but stairs are a real killer. I sometimes find myself crawling up them now, like Saskia – except she’s faster than me.
Due to these issues I don’t get out much these days. I would imagine for most people my current ‘quality of life’ would appear pretty rubbish (and in some ways it is). But I have found that by readjusting my expectations of what ‘quality of life’ actually means / involves, then it is possible to enjoy my days, and even take opportunities that would otherwise not be there.
For example, listening to music – I used to always be listening to music when I was younger. As adult life, work, etc, encroached then I found less and less time for it. But now I can lie on the bed with the iPod and rediscover my (fairly vast) music collection.
So it’s ups and downs where ‘quality of life’ is concerned. The trick is to focus on the positive (not always easy).
Right I think I will leave it there and see if I can’t get back to sleep. I’ll post this later though, I don’t want to get lots of angry people shouting at me for making their phones go off at stupid o’clock in the morning.
4 responses to “Early morning ramblings…”
Hi Ben, I hope you managed to get a bit more sleep after writing this! I was so pleased when I read this, apart from the bit about Saskia not being well, please give her a mahoosive Auntie Claire cuddle, but the fact that you’re pleased to have been given the opportunity to have this treatment, I totally agree that it should be you who makes that choice and I really think it’s the right one. By the way, if you run out of music to listen to I have plenty of Take That and Michael Buble you can borrow………:-) xxxxx
Hi Ben, Loved your last post – sorry for not being in touch sooner. I’ve been enjoying following your blog though.
Sounds like you’re onto a good thing with your present consultant – much better than the Marsden experience by the sound of things. And it’s great to hear you talking about focusing on the good things in your life – I’ve no doubt that it is difficult at times, but very important; I guess we all in danger of taking these things for granted and it takes something like your situation to bring it into focus.
Anyway, I must go to bed – I hope you manage a better night’s sleep.
P.S. I love your photos – they’re fantastic!
Your awesome Saskia and fantastic Sally, plus all your families have a totally awesome husband, father…
Once again thanks for your last blog. We hope Saskia is feeling better by the time this arrives.
Hope you are able to get more rest this week.
Lots of love to all and positive thoughts across the ocean.
As well as listen to music you can watch loose women on T.V.