69. Can’t really give this one another title can I?!

Never give up… on what matters TO YOU

Over the past three years, one thing I’ve heard loud and clear from everyone supporting me is “never give up”. Yesterday, a close friend asked me what’s been the hardest part of my cancer journey to date, and my response was trying to get my head around the concept of giving up.

Before last week, I thought giving up meant stopping fighting cancer, and accepting that it’s got me. But that’s not true. The reality is that everyone is fighting for something and the ‘never give up’ concept should hold true for all of us. The only difference is what you’re fighting for. Some people are fighting to breathe, others are fighting for justice, others are fighting for what they want (which may not appeal, be relevant, or make sense to other people) – but it’s what matters to that person. We often see / hear / read people saying be kind  or you don’t know other people’s stories or circumstances, and I’m as guilty of that as everyone else. Only recently during lockdown, I’ve been judging people for not keeping their distance, or for doing things which I think they shouldn’t be. But now I’m in a different position, my story is different, my circumstances have changed. So I’ve found myself being less judgemental and more tolerant of what others choose to do – sure there are still idiots out there who have little or no consideration for the bigger picture, but I’m not wasting any more time judging them. I’m doing what matters to me.

The big decision

Last week, I went into hospital for an MRI (brain) scan. I was then kept in hospital, hooked up to IV morphine, and given days or weeks to live, based on the fact that the stuff going on in my brain could slip me into a coma at any second. Luckily, the meds controlled the pain and I’m now back home, but before I could leave I had a BIG decision to make.

We could see issues in my brain, which could be addressed (not necessarily fixed) by big surgery to remove a tumour and surrounding cyst. I could also opt for smaller surgery to drain the cyst, but leave the tumour there (a temporary ease, but again not a fix).Or I could have targeted radiation to zap the tumour (and a few others we could see on the scan) which would be less invasive, but still not fax the issue.

All of these would only deal with what we could see on the brain scan, and there’s a strong chance that other issue/tumours could appear any time.

So the decision was, what treatment should I have?

Given the uncertainty around surgery (it held the same risk as any other brain surgery, but because the location is close to my brain stem, if there were complications, these could basically kill me on the table), the recover time afterwards, and the possibility of just hitting something else to deal with (during the treatment or in recovery), if I do surgery I may spend my remaining time in hospital and never come out.

Alternatively, I can do radiation (to which my body seems to respond well, albeit temporarily), and have hope of some sort of mobility / quality of life to be able to finish the way I want to.

This was the toughest decision ever for me. My Oncologist and medical team are all experts and great ones, but there’s no rule book with this – they can only make judgements based on experience, there’s no guarantees, the decision has to be mine. I struggled with it, because in my mind (and my Oncologist expected me to say this!) I wanted to go at it full guns – full surgery, let’s show this f***er who it’s dealing with. But after the scare last week, I now feel different. Saying ‘no’ to surgery is actually braver in many ways, not that bravery is my only criteria! But I know how shit I felt in recovery before, but kept going because I felt confident in being able to get back to living a normal life, and I’ve proven that – I came back not once but three times, I’ve had more surgery, chemo and radiation than I’d wish on anyone, it has defined the last few years of my life, but it has also shaped me, made me a better person and, I hope, others.

Tipping point

So I’ve decided not to do the big surgery. This week I will have full brain radiation to try and ease the immediate impact of what we know is affecting my brain. If my condition changes, I may also have the minor surgery to insert a drain into the cyst (again, to alleviate what we can see), and the radiation is likely to hit me harder (because my body is now weaker).

I’m doing ‘giving up’ by not doing surgery, I’ve passed the tipping point on the see-saw, so rather than living in hope (and striving for) feeling better every day, I’m now on a downward trajectory, where every day is a bonus. So my priority now is not to prolong my life, but improve it. Surgery would not improve my life now, but anything I can do that will make ME feel happy (regardless of whether others approve, agree, care or understand) is what matters to me.

Again, I struggled with this, as I saw it as being selfish. But another thing I’ve learnt this week is the difference between being selfish and putting yourself first. A bit like my comment about ‘idiots ignoring guidance on coronavirus’ I am putting myself first (and being up-front about that), but I won’t do it at the risk of others (so I’m not being selfish). That’s how I’m coping with his in my mind, that’s how I’m justifying my decisions now and that’s my new modus operandi, my new priority, my new way of living. It’s my new goal.

I’m still very much living and still fighting, but my ‘battle’ is about what I want, and that may not be the same as what others want, but it matters to me.

The plan

At the moment, things are still up in the air a bit – travel restrictions make it a bit tougher to just do what we’d like to do, but I currently plan to stay here in Amsterdam for the radiation treatment (and possible minor surgery if it’s needed) and do as much as I want or feel able to do each day. No itinerary, no lists (seriously, I’ve even stopped listing, I’m now just doing stuff!) and dad is hopefully coming over to be here to support me (if I need help during treatment, so I don’t have to go back into hospital), then bring me back to Yorkshire. We don’t know when that will be yet (as it’ll depend on treatment etc) but we’re in touch with the UK and Dutch border and immigration teams to help us get home.

By the time I get home, I may not be anything like as ‘able’ as I am now (the docs in hospital are astounded that I’m still as able as I am!) hence why I’m relishing the time I have to do little things for myself, as I know I may not be able to do them tomorrow, or the next day… Some of those things are simple pottering – putting out the rubbish for myself, making my own coffee etc) and my friends over here are being amazing by making things happen for me (like getting a boat out on the canals yesterday in the sun, when technically that’s not allowed during lockdown) or just sitting outside on a bench with a coffee or whatever.

Treatment begins tomorrow, so if I’m able to keep updating I will, but please don’t flood me with updates or, more to the point, expect me to respond   as quickly as I’d like!

And don’t judge – just do what makes YOU happy TODAY!

For now… #BoxyOut xx