It’s been nearly two months since our last update. The truth is, I haven’t written before because it has rather felt as though there isn’t very much to say. There has been a lot of waiting, doing all the same things and then waiting a bit more.

Bit by bit we have left Newcastleton. As predicted, it hurt. There doesn’t seem any adequate way to sum up those incredibly invested 6 years of our lives in such a special place, and we are still coming to terms with the upsetting reality that we don’t get to see our Newcastleton family every day any more. Although we mostly left in stages through October, Matt has travelled back for work commitments and our belongings stayed in our old house (thanks to the patience of our previous landlord) all the way up until last weekend. Our stay in the CLIC Sargent house in Edinburgh came to an abrupt end when they had a sudden change of policy on who could stay there when, but we’d had a good run and we weren’t sorry to leave.

Now, after 5 weeks together in a holiday let (think dated kitchen, children sharing double beds, and a Narnia-esque en-suite bathroom accessed through a sliding wardrobe door) we have moved into a lovely new home.

We now live in a 2^nd floor flat in a central student-y location with a stunning view of Arthur’s Seat. It just so happened that our lovely friends the Kennedys (award wining power couple extraordinaire) had a daughter whose flat that was becoming available to rent just as we needed one. We are so grateful for their help and to have scored another jolly good landlord.

The flat has a lovely high ceilings and a classic feel. More importantly, it has enough beds for all our children, all the amenities we need and the space to be a comfortable family home. We are very grateful for it. It’s nice to be reunited with homely possessions, although we were shocked by just how many of our things managed to stow away and come with us, when we thought we were being ruthless and travelling light!

The location is brilliant, we can walk to the hospital in 15 minutes and there are a huge number of shops and restaurants only 5 minutes’ walk away. It only takes 10 minutes to get to Aldi in the car…we can do a food shop and be back home within an hour, imagine! Quite a difference to the weekly half-day outing from the Holm and the rally-drive return trip to make it back in time for school pick up! Plus it was very kind of God, we thought, to put a mountain on our doorstep to help us outdoors-lovers adjust to city life.

Needless to say, it’s quite different living in a flat in a city to living in Newcastleton and we are all finding it an adjustment. We are getting the hang of taking the little bin bag to school with us every day to throw into a big bin on the street (no wheelie bins for us), of always parking at least 5 minutes’ walk from the house because we’re on a main road, and of not jumping out of our skin when someone rings the front door buzzer. We are surely a little fitter from all the stairs, but a little fatter from all the takeaways!

Beth and Joe are doing really well at school. They sometimes don’t want to go in the morning – it’s a lot to deal with and it tires them out – but they always come home happy. By Edinburgh standards, the school is fairly small – 290 children – but to our little country bumpkins it is big and very different. School is a 3 storey red brick building, a small tarmac playground with creatively used space, and one rather solitary looking tree. At drop off and pick up the playground is completely packed with people of all nationalities and religions – apparently there are 30 different home languages spoken by school pupils – and it takes at least 10 minutes for all the children to file in to the school from their various queuing stations. Beth reports the bell goes about 20 times throughout the school day, and she has no idea yet what most of the bells are for!

There are lots of exciting after school clubs and new activities to get involved with and both kids have made new friends (with names that are difficult to pronounce). A recent parents’ evening brought glowing reports of how well they have both settled in and got on with things. AND, get this – both children have been assessed as being academically ahead of where the city classes are up to, and are finding the work all a bit easy. Bravo Newcastleton Primary School for setting the bar high!

So, on to the news.

The good news isn’t really new but IS really good – Ben’s treatment still seems to be working. His designated consultant, Dr Matt, is a camp, personable fellow who, at the slightest encouragement, liberally shares his strong views on crisp flavours, pizza choices and the true intentions of various Disney characters (best not to ask). But we let him off because he is an expert on how to cure our boy.

Dr Matt tested Ben’s bone marrow a few weeks ago and was very pleased to report that leukaemia levels were low enough so as to nearly be undetectable. Another five weeks of chemo followed and on Tuesday this week Ben had another test, one that determines what happens with treatment going forward. We won’t get the results until at least the end of next week but Dr Matt is very optimistic that all shall be well, and that Ben will continue on the treatment track that he is on. We’re about to start intensive treatment block 3 of 4, so past halfway of the roughest bit now. Hopefully by about February time Ben will have finished the intensive part of his treatment and things should calm down a little bit.

I asked Dr Matt if it was possible for the leukaemia levels to rise again in between tests, and he said it was possible but very unlikely while chemo is ongoing. In fact, true to his quirky character, as we stood in the hospital room discussing it, he said that if the leukaemia levels have increased since Ben’s last test, he himself would eat the bedside table. Strangely reassuring somehow!

Ben is still Ben, a little thin, bald and sometimes a bit bruised looking, but still cheeky, chirpy, happy – and always up for a spot of baking. He is enjoying a happy reunion with all his toys too!

The bad news then. Considering we’re talking about a cancer journey, it’s not really bad news at all. Let’s keep some perspective. It is, in fact, simply a direct knock on effect of the good news.

In short, we shared with Dr Matt our intentions to make our move to Mexico in around a year’s time, when Ben is properly settled onto the ‘maintenance’ phase of his treatment, which we understood was less intense and would allow him to go back to normal a bit. We directly asked our consultant what he thought of this plan, which we hadn’t done before.

To our dismay, but not our total surprise, Dr Matt was unequivocal in his advice that we shouldn’t go to Mexico until Ben’s treatment is completely finished and he has been re-immunised, which will take at least another 3.5 years. “We’re not jailors” he said, meaning that we still have a choice, but his advised course of action was pretty clear. Patients on chemo are not supposed to travel on aeroplanes because of the infection risks, apparently, or travel to international destinations. Ben will still have very low immunity thanks to the ongoing chemo, and foreign bugs and serious illnesses would certainly pose a threat.

At the moment, Ben can contract an ordinary infection and it can escalate into life threatening sepsis within an hour, so he always needs to be near a cancer specialist hospital to be quickly treated. We thought that wouldn’t happen any more once he gets into maintenance, but apparently we misunderstood that – the risk remains. He is less likely to get an infection as his body will recover a little once the intense chemo stops, but it is still possible and the same protocol will need to be followed. Going through all that in Mexico could prove very tricky. On top of that are all the questions we hadn’t quite resolved yet anyway about where treatment would be available in Mexico and how we would afford it.

Plus, if we’re really honest with ourselves, we would be terrified to start our new adventure knowing Ben was still ill anyway. It is stressful at times being responsible for his care, so to step away from the oversight and expert advice of the hospital and manage his care ourselves, even if only temporarily, would be a very big deal.

So the ‘bad news’ is that we aren’t going to Mexico now for at least another 3.5 years. We’re totally gutted and it has thrown us considerably. We made so many decisions and preparations with Mexico in mind up to now, that it’s very disorientating to refocus on such a different horizon. The nagging idea that a lot can change in nearly 4 years, putting our plans into further jeopardy, has occurred to us too.

We are so moved by and grateful for all the people that have already started supporting us financially with a view to going to Mexico. Thank you, you beautiful souls. Obviously now that departure is so delayed, things are rather different. We’ll get in touch with you individually to talk it through.

I for one hadn’t realised quite how much I had been living in the future, just how much the notion of our exciting adventure ahead was keeping me going.

Edinburgh is beautiful, friendly and bustling with new opportunities. We have been incredibly well looked after by God through some seriously generous people, and all the right things falling into place at the right time without us even having to think about it. We have already made some lovely friends at church who we know will be keepers. Our new church is incredibly welcoming and supportive. It will work out well here, we know. But we haven’t quite got our teeth into settling in yet, and it might take us a bit of recovery time yet before we truly feel that we want to.

Without a future adventure to pull us ahead, or the warmth of a close-knit community to anchor us down, we feel a bit adrift to be honest. We don’t have a new routine yet, and we’re unlikely to settle into one for a while until after Matt is all finished in Newcastleton at Christmas. We are finding there are both pros and cons to being at home together with Ben during the day, not something we’re used to. Apart from hospital appointments and being on permanent standby to rush Ben in, there is little to do beyond the school run, and job hunting for Matt. There are few people to see, it could get a bit lonely if we’re not careful. Our diaries are empty for now, and the opportunities for reflection, self-questioning and excessive episodes of Paw Patrol are plentiful. Life is rather blank.

A blank canvas.