A different challenge - Part II

So here we are a week after my surgery and a lot has changed so thought it worthwhile sending out an update. I know I said I wouldn’t do this, but actually I find it quite cathartic so why not – if you can stand to read all this please do, but I’ll understand why folks might not want to.

Where to start? Probably with the brain surgery I guess – I went into Salford Royal at 7am on Thursday 1 August – by 10am I was unconscious and next thing I remember was coming around about 1-2pm in the recovery area. Lots of questions like “what date is it”, “do you know where you are and why”, and “who’s the prime minister” (didn’t particularly want to give that answer!) just to establish you still have your faculties, and then it was a few hours of deep observations while they baseline you. I passed with flying colours and was dispatched to my High Dependency Ward at about 4pm.

By this stage the headaches have set in as the anesthetic starts to wear off, so a few shots of oral methadone were required (good stuff, but boy you can see why they have an opiates issue in the US!), headaches continued for a couple of days but I just managed with paracetamol after the initial few hits. The following morning the nurses and doctors were happy enough with progress to disconnect all my tubes and monitors and I was able to get out of bed (hooray!)

I spent one more night in hospital and then was discharged on Saturday evening. My wound dressing is off and the stitches come out on Monday 12 August. So a completely brilliant experience from end to end – my surgeon was one of the calmest most reassuring people I have ever met – she’s Greek, also worked in Canada and one of a fantastic team of international neurosurgeons working out of Salford Royal – I just can’t speak highly enough of the care and professionalism demonstrated by everyone at this hospital!

It was also great to find myself in a bed next to a fellow sales professional – Paul if you’re reading this you’re a total inspiration and it was great to have someone so like minded to talk to during those difficult first few days - I really appreciated it!

So at this stage as far as we know, we got rid of all the tumour in my brain – that is subject to a review of the MRI scan I had post surgery, so there’s a small possibility of some radiotherapy to mop up anything we missed, but I think that’s unlikely following the other developments on the lung tumours.

Last thing to say about the brain tumour. Because I suffered a couple of seizures at the outset of all this and am still on anti-seizure drugs for the time being, I am expecting the DVLA to take my driving license away for at least 12 months. That’s probably hitting me harder than anything else right now as those who know me know I love driving and love my car… I’m wondering whether it even makes sense for me to keep it… difficult decision to make there, and I am a bit concerned about my own independence (I don’t like relying on other people!)

Now onto the lung cancer… so this is where everything has changed – both in good and bad ways, but to be honest not that bad as when you do any reading on lung cancer you quickly get your expectations set that you are probably never going to be cancer free again in your life, so I was already fairly prepared for what was to come.

So it turns out that post biopsy they are now 99.9% sure that I have a rare lung cancer type known as ALK+ Non-Small-Cell-Lung-Cancer. This rare type represents less than 5% of lung cancers and crazily for someone who had put all this down to smoking over they years is probably not caused by that! What we do know about ALK+ NSCLC is that it likes to spread and in my case already has in that we have the main tumour in my lung, a secondary smaller tumour in the same lung, the one we just cut out of my head and strong indications of presence in my lymph nodes as well. In these situations with this cancer type it really doesn’t make much sense to go with surgery, as the cancer has probably spread somewhere else regardless – so the good news (and this is good news) is that I now have no further surgery on the horizon – lung lobectomies and removal of lymph nodes are very serious operations with major life impacting implications and long recovery times – if those can be avoided they should be.

This doesn’t mean no treatment though – the further good news is that there a specific set of drugs which have been developed over the last 10 years that treat ALK+ NSCLC – these work by arresting the spread and growth of new tumours by some degree – they can stop spread and even cause some tumours to shrink (where they work). So I have started a program of these drugs as of today and will I expect be on this one or a similar one for the rest of my life. Let’s be clear, no-one is using the word “cure” here – we are in the realms of treating and extending life – for how long we don’t know, could be as little as a year, could be as much as 10 years (in fact the drugs are so new we don’t really even know the upper bounds of survival)

You can think of the drugs as a bit like an oral chemotherapy- no need to go into hospital and get fed anything through an IV or canular, I just have a bunch of pills to pop with breakfast and dinner every day and a huge list of potentially scary side effects to deal with as they pop up, but I’m not too worried about that as it turns out the trial drug I have been taking for a week or two prior to my surgery is a very similar ALK+ inhibitor to the one I am now prescribed and the only side effect I got from that was a small skin rash which wasn’t even itchy.

So how am I feeling about all this? Well pretty positive to be honest – I don’t have to go through any more debilitating surgery in the near future, and I have the opportunity to drive up my overall health so I’m prepared for anything that does happen in the future, plus I have a treatment plan in place now which means I have some surety about the next few months rather than everything changing every few days - that’s making a real difference to how I’m feeling, and I’m hoping my sleeping will settle back down now I have that (getting less than 5 hours a night at the moment!) after three months on the drugs I will go in for a new CT and MRI scan and we’ll get our first view on how effective the treatment has been for me – in the meantime I’ll just be on a regime of giving blood samples every two weeks and seeing my oncologist once a month. I can live with that!

Works-wise I’m keen to push some normality back into my life - I’m really not feeling the need to go start chasing bucket lists or anything like that yet - I’m sure that time will come, but not yet! Clearly I’m not going to just pickup where I left off (no driving puts the mockers on that), but I’m honestly thinking some time in September I’ll be back in some capacity unless the drugs really hit me for six.

Before that we’ll try and squeeze in a little holiday – that much I do know I deserve.

So shall we sign off with some philosophy? Try and put into words how I’m feeling? OK lets try this – cancer can be a scary thing, knowing your going to die, but we all die eventually and I already got lucky having my seizure just 15 minutes after getting out of the car – I could have had it on the fast lane of the motorway (and if you know me you can be sure I was definitely in the fast lane!) So the only question we should be asking ourselves is what we do with the time we get, and for me I’m determined – 100% sure that I don’t want to spend one second being miserable about this – I want to live every second of every day I have left – not all doing crazy bucket list expensive nonsense, but loving my life the way I always have and the way I want to, with all the great friends and family I have around me. For the time being at least that’s going to mean continuing to do the work I love, so expect to see me back on here and back around HPE in the near future – don’t be a stranger – I really haven’t changed (apart from the beard and the “interesting” scar!)

Love to all,

Duncan