2 Cor 12v9

Sunday, 8 December 2013

Chemo

Chemo is an ugly, ugly thing. It's like poisoning someone from the inside out, destroying cells that are valuable along with the cancerous ones, and ripping away familiar features to replace them with grey pallor.

I know my husband was already sick because the pain in his back was really intense, and because the scans and blood tests have told us so. But he didn't look sick before and apart from the pain, he could still do all the stuff he normally could.

The first lot of chemo had a few side effects that effected his energy and temperament and unfortunately caused blood clots. The second lot seemed even milder which we thought was good, until we realised it hadn't stopped the tumours at all. So now we're on the really heavy and toxic stuff, which we know is working because he feels like crap, his hair and beard have fallen out and his blood levels and spinal scans are looking much better. He can't go any further than from the couch to the bathroom at once, and it takes him twenty minutes of deep breathing to recover afterwards. He had to go back into hospital again after the chemo infusion because his white cell count dropped dramatically (as it's supposed to) and he couldn't fight a virus already at work in his body, but he's home again now until he has to go back in and do it all again.


The kids are thankful to have daddy at home, even if he looks very different and can't seem to do much. Thankfully winter is a good season to hibernate and enjoy lots of cuddles and movies and so we're making the most of that. We packed in a lot of family time before he went into hospital and so now we're about keeping things low key and simple, and waiting it out until he feels better.

It makes it harder when every night he's faced with a choice as he sits and looks at packets of drugs, knowing he has to take them, and that they will continue to break him down and make him feel worse the day after. He'd far rather stop this whole process now and begin to feel like his own self again and be everything his family want him to be, but he still chooses to put them in his mouth and swallow because he knows there's more at stake here than just how he's going to feel tomorrow.

I can't explain how chemo works and I wish I could suggest an alternative, but I'm just not clever enough. It's an ugly, imperfect, painful solution to a much worse problem. I have to accept that there's only one way through it and hope that one day a better one comes along. I wish things were different, but while they're not, we're going to trust the advice we've been given from people who know better than us and accept the horror we're going through in our quest for life.

But the same could be said for all types of suffering.

We don't understand it yet we can see the awful results of it all over. We ask all the time why it has to be like this and why things can't just be easy. Whatever the problem, is it really as bad as what we seem to have to go through in order to deal with it? Why can't God just let us get on with our lives in peace? We hate the suffering because it's so obvious, painful, life changing and heavy to carry.

But what's the alternative? Suffering changes, refines, weakens the bad and strengthens the good. It unearths stuff we didn't even know was there and brings it to the surface. It's an ugly, imperfect, painful solution for a much worse problem. Without suffering we could never understand our need for God, our frailty as humans, and the disease of self-righteous sin that seeks to destroy us from the inside out every day. And one day there will be a much better answer than this one.

I, for one, am grateful for suffering. I have learnt so much from it and have grown to love more, lean more and laugh more as a result of it. I don't understand it, and there are days when I cry out for no more, but I have learnt to trust the One who tells me to keep going and that it won't ultimately kill me, but instead it will destroy the bad and release the good. The suffering is unavoidable. If you're a human, it's part of the deal. But choosing life - that's the option we have.

I choose to accept suffering; I choose the medicine that looks like it's going to break me; because ultimately it leads to life, and that's what I want most of all.


Tuesday, 12 November 2013

Between Worlds


This is going to be a mega one. My laptop broke a few weeks ago and I’ve also had very little processing and quiet time to write everything out, so here’s a long update.

A few weeks ago we went down to The Christie hospital in Manchester to discuss treatment plans. When dealing with cancer, the first thing is to get that cancer into remission, through chemo, radiotherapy and/or surgery. In the case of many cancers, that makes it go away indefinitely. In the case of myeloma, it always comes back – it just takes different time scales with different people. The longest life expectancy given from diagnosis is seven years. In order to help the body stay in remission for as long as possible, if the person can cope with the treatment, they are given an autograft. This is when stem cells (cells that are in their birthing process and are still tiny and uncorrupted by the myeloma) are taken from the body, then the existing bone marrow is heavily reduced through chemotherapy. The new cells get reintroduced to the body and they take over the running of the show as they are healthy and can grow and multiply quickly. This can lengthen the time of remission for a year or two (nobody ever knows how much exactly because nobody knows how long the disease would have taken to come back in that individual anyway) but the myeloma will still always come back. For most myeloma patients, this is the best way forward, as they are generally older (50+), the procedure is safer (99% get through the autograft itself) and it buys them more time. It can even be done twice over the course of a few years.
But...Richard’s situation is different because he’s only 38 and (spine-fracturing tumours and bone marrow cancer aside) he is fit and well. We have the option to go for an allograft, which is when his own bone marrow would be completely eradicated, and replaced by someone else’s (and weirdly enough, is exactly the treatment we ended up going through with Scooby). This process is really dangerous in adults. The chemo that destroys the bone marrow is extremely harsh on the body; then you have to live for several weeks with no functional immune system at all while your body has to grow these new cells; then the new cells have to like and accept the new body that they’ve found themselves in (in the event of this not happening, a process called Graft vs Host disease happens where the immune system starts to attack the organs of the body); then you have to live for months with a new, not quite fully functional immune system that can’t quite fight off infections on its own; and to top it all off, all those bacteria that live in our gut permanently and don’t bother us because our immune system learned to keep them suppressed years ago, will raise up in the face of the new immune system and will have to be fought and subdued all over again. How they ever pull this off with modern medicine, I have no idea, but they do! To get the best chance of getting through it, a sibling donor is the top preference, and Richard’s sister has turned out to be a perfect match, and she is more than willing to donate her cells for this process. Even with the match, the chances of getting through an adult bone marrow transplant is only around 70%.

But...it could be a cure. There’s no guarantee, and statistics are still a bit vague as BMTs are still a fairly new procedure, and the medicine surrounding them is changing all the time, but the doctor at The Christie said 40% of people who’ve had BMTs are still myeloma-free ten years later.

So for the last couple of weeks this is what we have been thinking and praying through, and working out at what point next year it was likely to happen.

But...last week we went in for the result of Richard’s scans on his spine. All year he’s been in extreme pain, and it seemed to get even worse a few weeks ago, but it was thought that it was the after-process from the surgery he had to remove the tumour two months ago. The doctors were really pleased that his para-protein levels had fallen dramatically since the chemo began, and that was a sure sign that the cancer was already coming under the control of the chemo. But the scan showed a whole different story. Not only has the original tumour returned, but with extra material on the spine too, and in a very short space of time. It’s like it hasn’t even recognised the chemo at all. It’s baffling for the medical team how the body can be responding to and ignoring the treatment all at the same time, but they have acted very quickly to the situation to try and fight back. Richard was taken straight into hospital and given radiotherapy on his spine to target the tumours, and his daily medication has been changed.

On Thursday he will go into surgery to have a central line put in, and then he will be treated with some of the most severe chemo you can have, through that line. It will be a four day stay, and it will be repeated four weeks later. If it’s successful and the cancer responds, then we’re hoping the transplant will happen early next year.

The consultant has said over and over how unlucky we are – firstly that the diagnosis took a long time (they knew it must be there but they couldn’t get evidence of it no matter how hard they tried), then that the first round of chemo caused complications through the pulmonary embolisms, and now that the second round has not been able to affect the cancer. I know that it looks like that in this part of our story, but in the rest of it, nothing could be further from the truth.

Right now things are going amazingly well. The kids are thriving at home and at school, our church is stronger than it’s ever been, we’ve completed the work on our new church building and have moved in, and we’re part of an amazing supportive community. Our vision to see people grow and thrive and get closer to God is actually happening and we’re loving it. It’s like living in two parallel worlds most of the time; one where we are eating together as a family, and going for days out, and meeting up with friends, and leading meetings, and preaching, and in this one my husband is upright and in pain but still functioning and active and effective at everything he turns his hand to; the other world is one of waiting rooms and fuzzy pictures on screens and bags of medication, and life-changing news and a-rock-and-a-hard-place decisions, and hospital gowns.

I think some people wonder how we’re still engaging with that first world while handling the second, but really, why not? When we first faced the possibility back in March of a myeloma diagnosis, Richard asked himself the question “If I only had two years of my life left, how would I use it?” The answers were: to nurture and invest in family, to build church, to help people find God, to train up leaders who can continue not just to run church but to grow and develop it even further, which in turn then nurtures and invests into our family. In other words: exactly what we’re already doing. How many other people are ‘lucky’ enough to say that?

I’ve grown up with the knowledge that this life is not just ‘it’. This is just a tiny bit of the bigger picture. There’s been chunks of time when I wasn’t so sure if it was truth or just wishful thinking, but then when I looked around I couldn’t see anything else that was worth living and dying for, and building my life upon, so I just stuck with walking down the path I’d been taught to walk down. And I’m so glad I did. By the time Scooby died, it was no longer a distant hope anymore, I feel like it’s something that I’ve been living and breathing and experiencing every day: eternity. Knowing that before me there was God and after me there is God, and so why should I fear anything that can happen in this life? We’ve already faced the worst and it bruised and pierced and tore pieces of us away, but it didn’t destroy us. When everything you are is built into Jesus (the author of life and the defeater of death, hello) and you’ve already given Him your life, you then have total freedom – fear has no hold on you, loss won’t break you, you are never alone, and you always have hope and purpose, no matter what you go through. The pain is real, and many days I wake up sick to the stomach with what we have to face that day, and I cannot and do not want to think about a future for my children without their father in it, but none of that stuff can destroy me. That has nothing to do with any kind of strength that comes from me, it’s all about what Jesus can do in your life if you let Him.

This stuff is never more real than when you’re reminded just how uncertain and unfair this life is. And with each ‘unlucky’ step that’s been unfolded to us in the doctor’s office, along with the tears and the confusion about why this is all happening, is the knowledge that actually no matter how increasingly bleak the prognosis is, if the author of life and defeater of death wants my husband to stick around on this earth for a long time, then He will make that happen, no matter what the odds.

Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 8v35-39

Saturday, 5 October 2013

Deep Breaths (or Lack of)


We knew the first couple of weeks of Richard’s treatment would bring some chaos and unexpected issues to deal with, but it ended up being more dramatic than expected. As well as the pain in his back from the surgery, he developed pain in different areas of his body too, especially his calf and his chest. We went into RLI on Wednesday last week to get it checked out, and he was given the all-clear then sent home, but then the breathlessness he’d been struggling with all week took a nose-dive in the early hours of Friday morning and we ended up calling an ambulance to get him in. Scans later on in the day showed he had blood clots on both lungs and they also thought they saw other changes which they didn’t expect. Coupled with the increased pain in his spine, we spent a very bleak weekend expecting to hear more devastating news on Monday.

Thanks to incredible friends who took care of the kids, we were able to spend a lot of time together, and when more investigations happened on Monday, we were very surprised at the results. The site of the tumour actually looked better than they expected, with less, rather than more material than they thought they would see. Some of the changes and the extra pain turned out to be lung patches due to a chest infection from not being able to breathe deeply post-op and with the clots. This has now been treated through medication too. So nothing has actually changed, but it does mean we were able to exhale freely after thinking things were about to get much worse.

Richard was able to come home on Thursday, still in pain and struggling with breathlessness, but much better than he has been. The original chemo plan has now changed as the previous medication put him at high risk of blood clots, as does the myeloma, and so now he’s had some it’s not worth the risk of going back on them. The alternative course of chemo will be administered via IV twice a week, starting next week, and will have more severe side effects. We will get more information about what that will look like on Tuesday.


The rollercoaster of never knowing what’s going to happen next and medical plans being changed without warning is not a new thing for us, but handling it all with only one parent at home and one being the patient is. We’re so grateful for the people who are around us and the level of commitment they are giving to our family. The kids have had some great experiences in the middle of it all and are, as always, just going with the flow of whatever life throws at them next. They are incredible. In fact, one of them has just brought me up a cup of tea, increasing his incredibleness even more. This same one has also just learnt to make cupcakes at school this week. If that doesn’t sound like perfect timing, I don’t know what does.

Monday, 23 September 2013

What Is

Since the beginning of the year, Richard has had lots of trouble with his back, to the point where he spent several weeks barely able to move. It turned out not to be so simple as a slipped disc, when scans showed there was an unusual “process” (consultants love that word) going on. From the moment of that first scan, before the doctors mentioned the word, thanks to Google, we were alerted to the possibility he might have myeloma. For some reason though, test results that came back in April were clear of cancer traces (see What Wasn't). We were hugely relieved, but also aware that something needed to still be diagnosed, and with each new appointment with Richard’s consultants, it was clear that they weren’t going to let the idea of myeloma go. Gradually it became clear to everyone involved that it was the only option.

For the last few months Richard has had an appointment at least once a week, either for scans or biopsies or blood tests, and with each follow up meeting we went with anticipation, waiting for the result we knew had to come sooner or later. But each test came back inconclusive – the most popular result for any medical test in our family. We were considering changing our tag line from Team Scholes to Team Undiagnosable.

Then a month ago, Richard developed severe pain in his upper back and another scan was organised for him to investigate it. Two weeks ago, he got a phone call to go to Royal Preston Hospital with an overnight bag – the next day, before we understood what they’d found, he was taken into surgery and given a double laminectomy, which removed bone from two of his vertebrae, and also a tumour which was attached to them. He came home a few days later, unable to lift his arms much at all, and with a line of staples in his back.

So last week we went back to see the consultant at Royal Lancaster Infirmary, wondering whether to expect our usual prognosis of ‘inconclusive results’ or something worse. It was the second one. It is multiple myeloma, and it must be moving quickly in order to have produced a tumour in a short space of time.  At 38, Richard is the youngest patient they have seen in that department with that type of cancer, and for that reason they are acting quickly in order to attack back. Usually myeloma is incurable, but usually its victims would not be able to withstand aggressive treatment needed to tackle it because of their age.

We haven’t asked for a prognosis for life expectancy, because we don’t want to know. We just need to know that there’s a chance, even if it’s a slim one, and that’s enough to hold on to. Chemotherapy has already started, and is in oral form, meaning we don’t have to go to the hospital for it. The immediate plan is six three-week cycles in order to suppress the cancer, with potentially a bone marrow transplant further down the line. He is being referred to Christie’s in Manchester though, so it’s possible that his treatment may change at any time once they look at his case.

I’m grateful that it hasn’t been a shock to us – we’ve been thinking about this for months, knowing it was probably coming, and so we’ve had a lot of time to mentally adjust to it. I don’t mean that we have resigned ourselves to it and had given up hope; I mean that we had already decided months ago that no matter what the diagnosis was, we would face it head on and trust that there is a bigger plan surrounding this, one that we don’t yet know. I still wake up each day feeling sick, and have waves of sorrow and impatience and grouchiness, but I don’t feel that fear has a hold on either of us at all. We’ve already faced the worst in this type of situation, and through it we saw God’s continual grace and power, and had our characters shaped in a way we never thought possible. I still believe that God can turn all this around in whatever way He wants to, whether that is a supernatural healing (FYI Lord, that would be a great story - think about it), or a long hard journey toward remission, or more bad news to top what we’ve already had - it’s His call. I’d rather be on this ride with Him than doing anything else in this world.

We’ve told the children and they’re handling it well. I don’t think they realise yet that most families don’t seem to spend as much time in hospital as we do, so they are quite chilled, and thanks to the amazing people we have around us, mornings, tea times and bedtimes are going as smoothly as ever, whether we’re there or not. I’ll finish off my summer holidays post soon, partly so you can see what we’ve been up to, but mainly to remind myself, because at this stage, summer seems like forever ago.


Your prayers and support are valued as ever – thankyou so much for everyone who has already been in contact. It’s great to know that we are not doing this thing on our own.

Friday, 13 September 2013

Summer Part 1

I don't know if every parent does this, but I have way too many moments of "I need to stop and record this right now because it's moving too fast" and then feeling like there's too much stuff to record, and too little time to do it in. That's why I love Instagram and Twitter other social networking sites - whip out that phone, and the moment is captured and uploaded in a second. Unfortunately, I'm governed by a lack of organisation that means that my iPhone is as far as that image goes - it's full of photos that need uploading and printing into albums, and quotes and stories that need writing down in a logical order, rather than just 140 characters sometimes. And I've also found myself governed by those thoughts of "I've already posted two pictures/funny quotes up today. If I post more then I'll be annoying and clogging up everyone's feed and looking like I want lots of attention and likes for everything my children do." So then I allow self-consciousness to take over my memory keeping, and forget the things they said the day after when I should've just written it down anyway, whether I sent it out to the world or not.

That same self-consciousness and lack of organisation is what stops me going here on the blog. I worry that I don't want to bore people with more pictures or stories, or that if I don't post up in a regular and systematic way, that I shouldn't post at all. This is ridiculous, because the reason I started the blog in the first place was to capture memories, no matter how spasmodic the intervals might be between posts, or how uninteresting my words and pictures might be to the rest of the world. 

Anyway, this week has been one of my occasional melt-down weeks, where I feel I am falling far short of the mark, as a parent, a household manager (actually, I feel like that every week), and as a church leader and I realised I need to stop focusing on the fifty-something things I haven't achieved this summer, and take stock of some of the amazing stuff we did do. 

As our memories don't manage to retain everything anyway, as hard as we might try, the beauty of social networking is that we can choose the bits we loved and WANT to retain, and just post them up instead - thus convincing ourselves we've had a marvellous time and shedding ourselves of the inevitable MummyGuilt that threatens to drown us as parents and tell us we're never quite good enough.

So here's what some of our summer looked like....



The only time a mother lets her child get his shirt written all over - the end of primary school!


This is a new award that the school commissioned last year. It goes to a child who is showing a great attitude despite difficult circumstances. Both years a child who has experienced the loss of a parent has won it, and hearing their stories has been very moving.


First day of the holidays: we went to stay at the house we spent all last summer at, on my Uncle and Auntie's property. We stopped at the supermarket for summer essentials ( = new books) and this is how they walked the rest of the time through the store.


My summer treat. I did way too much reading this summer :/


I have no idea.


When you get carted straight from the pool and into your bedroom because of your behaviour, there's only one thing to do. The beginning of the holidays we saw the last throes of the toddlerdom. She seems to be emerging much more calmly through the other side now. P. T. L.


Ha. Adventurer boy.



They were chilling by the pool when I leapt out and attacked them with their own Nerf guns. They had no idea I had smuggled them on holiday with us. Think the village will be finding darts all over for the rest of the year.


We managed a few trips to the library, because Rocky was missing his reading books from school. By the end of the holiday he had a long reading list to take into his Year One classroom. 


We did this a lot. I'm thinking Ace must've had a really good hand that day.


Annual agricultural fair. They love the stalls and the animals, but they love the rides most of all :)


Creature spotting.


Fun at the local splash park with some of our besties. I love the bottom left hand picture. Turtle spent so much time chatting to her, and she's only a few weeks old. He's decided that he's going to adopt when he's older, because he wants children but not a wife. I'm hoping that's because he's in the 'all girls are disgusting' phase, and not because I've set him such a terrible example of what it's like to be married to a woman.....


Ace and Turtle went on a youth camp in Nefyn, North Wales and absolutely loved it. Great activities, opportunities and teaching...

 .
...meanwhile I was left with two children. Two! I've never had just two before. So when I dropped the older boys at the pick up point for the coach, and I saw that the traffic home was bad, I decided to take Rocky and Baby on a trip round Ikea. It was the least stressful, most leisurely Ikea trip ever. They just pottered around, sitting on the furniture, pretending to eat invisible food, laughing whenever they saw a toilet, and squealing whenever they saw things that we already had at home. We had a blast.


Our reward for good behaviour (though I didn't need that cinnamon roll - a trip round beautifully designed, tidy family rooms is reward enough for me).

More to follow...

Wednesday, 10 July 2013

Equipment for Life

I love watching the individual attributes in my children; how they make their own path in life and are so passionate about how they approach each adventure.

This weekend we decided to go rockpooling at a nearby beach and although they were all excited, it was all for different reasons. Here’s what they each decided to bring with them in the five minutes they had to get ready:

This girl immediately shouted “I can wear my swimming costume with my fish on it!” and was even more excited when we gave her a sunhat to go with it. Looking the right part in the right place is extremely important to her.


This boy ran upstairs for this swimsuit with floats in, because it would mean he could go deeper and further with it than without it. He isn’t daunted by any challenge he could be engaging with – he likes to face it head on.


This boy straight away went to where we keep the fishing net (I wouldn’t have even known where that was!) and a plastic tub so he could keep all the things he discovered in the rockpools. Interacting with wildlife is one of his top priorities (sometimes I think he prefers creatures to humans).



And this boy went with nothing, partly because he doesn’t like lots of stuff to sort out and organise, but mainly because when you have an imagination like his, you don’t ever need to take anything with you anywhere in order to have a great time and go places you’ve never been before.

Saturday, 22 June 2013

The Swirling Vortex of Terror

A long time ago, before the idea of having a blog even existed in my head, I wrote a few stories down about disastrous events that happened in our world of small boys, when Turtle was about four and Scooby and Ace were two and a half. The events are true; the narrative severely embellished. I thought they were long lost on a dead hard drive somewhere, but my mother (an extremely useful person to know) had kept them safe and sent them to me recently. Here's the first one - enjoy!

Indiana Joel

and the Swirling Vortex of Terror
a true story (unfortunately)


9th January 2006

The time was somewhere in the evening and once again my comrades and I had been captured and incarcerated in The Chamber of Slumber. As before, we attempted to escape down the halls of darkness but as always, our plans were thwarted by The Giant who lives in the magical TV room.

Tonight, however, I decided that the only thing for it was to try other escape routes. Not through the camp's main entrance - our previous bids for freedom that way have only ever resulted in cold and sore feet as the terrain is extremely painful and each night our captors make sure they steal our shoes in order to prevent us from trying again. No, this time, I discovered a new entrance, into the cavern of Dah Dees Rhume.

Having ensured that the way was clear, I encouraged my partners to follow me and we searched for means of escape. High above my head, I spied a window but my attempts to reach it were futile. Suddenly I was hit by a stroke of genius. In the corner of the room was a porcelain white fountain. Was it possible that if I could flood the room with water, we could then stand on the bed, which would float higher and higher until we were finally level with the narrow ledge? It might just work.

Precariously I climbed up, across cabinets and side tables, until I could reach the faucets and then using my superhuman strength, I turned them both onto full power. To increase the volume in the sink, I began to throw in anything else that may disperse water; hand soap, face wash, a tube of toothpaste. The plan was working and as Isaac climbed up to safety on the bed, the water swirled round and round and eventually reached the top of the sink, and began to flood over the sides.

However, I had not banked on the ineptitude of my other comrade, Daniel, who, in his eagerness to view my mastery at work, had placed himself directly underneath the fountain and was now deluged by the waterfall pouring over his head. I feared his shouts and screams would give us away so I tried to reach him but as the floor was now sodden I did not want to get down from my position of safety above. I watched in delight as the water began to seep under the bed and reached the other side of the room. Soon the bed would begin to rise and my plan would be complete.

But then, to my dismay, I heard the front door open and I waited with baited breath to see whether it was friend or foe who would discover our plan. Alerted by Daniel's screams, I heard the figure discover our absence from our cell and it began to approach Dah Dees Rhume. The door opened to reveal the worst of all creatures.... The Mummy!

Needless to say, the taps were soon shut off and I had to quickly think of a plan to save myself from certain doom. So, with my most convincing expression of shock and disbelief and a voice full of innocence, I turned to look at the room, as if seeing it for the first time and said.... "Ohh No!!"

Unfortunately my excellent theatrical skills were not enough to save us all from the punishment that ensued and we were soon returned to The Chamber of Slumber while The Giant and The Mummy spent a good deal of time coming and going into the Rhume with towels and misshapen wet objects.


I shall have to continue with my plans another day...

Wednesday, 22 May 2013

D Day


We made it. I know it’s only one anniversary of many, but it’s another hurdle crossed. The sense of relief, that we didn’t drag ourselves over that hurdle in broken pieces but as a fully functioning family unit, scarred and incomplete but healthy, is so reassuring.

On that day, a year ago, when our boy left us to go on into eternity, and we gathered our things from the place we had lived in for so many months, and got into the back of my parents' car, there were two prevailing thoughts in my head.

The first was “How will we ever manage to do things again?” A whole myriad of things swarmed through my brain – eating meals together at home, movie nights, going on holiday, playing games, birthdays, Easter egg hunts, Christmas – that we would continue to do, and yet he wouldn’t ever be doing them with us. I’d forgotten how we did any of those things before him, and I was terrified at facing them all again without him. I had no idea how our other children would cope, especially the band of brothers who had never known life without him as part of their tribe.

So yesterday when I thought back to that day a year ago, there was definitely a feeling of triumph – that we had faced all those things at least once each, and had been able to get back on our feet again afterwards, no matter how hard it was. There is so much comfort in that, knowing that if we’ve done it the first time, we can do it again.

Somebody recently complemented us on how well we were doing but asked if we ever ‘slip’ into an emotional state about it all. I think the thing we’ve found is that we don’t see any of the emotions that come with what we’ve been through as a negative thing. Obviously we have to respond appropriately in certain times, so sometimes we have to hold back if we know it’s not a good place or time, but generally if we feel sad or angry or depressed, we just go with it. We ring each other up, or wait till the kids have gone to bed, then we’ll have a good cry and a wallow with some photos and memories, but it’s always with the view that we don’t allow it to paralyse us or affect any big life decisions. Sometimes it’s ten minutes in the car and sometimes it’s a week where I struggle to get out of bed and avoid spending time with other people as much as possible, but it rises and falls, and so we let it, and we’ve found that the unbearable moments of grieving always pass, and that eventually they get shorter and less frequent, but we will never expect them to pass completely.

The second thought going through my head that day was simply “It’s over”. From the intensity of sitting by a bed for weeks, being ruled by machines and medication, waiting for the last thing you want to happen, trying to fight it when you’ve got nothing left to fight it with, not knowing what to think, speak or pray, to suddenly find it all behind you, and know that you never have to spend another minute of your life worrying about your son because he’s made it through the worst and now is placed into the ultimate, best and most satisfying existence – there’s a huge, release in that moment.

Riding home to tell the rest of the family the news, replaying the awfulness of what we’d witnessed in the last few days, the sky was the most brilliant blue I’d ever seen, totally unexpected after months of grey drizzle. It was glorious, with barely a cloud and in my blurry, non-sensical sleep-deprived state, I just kept thinking that it was like heaven was having a massive party (that lasted for the next ten days) to welcome our boy and to celebrate that his suffering was over, and that they’d made the sky as blue and sparkly as his eyes used to be.

The surrealness of stepping from the dim hospital room and all that we had just witnessed, into the sunniest, brightest, bluest day I think I’d ever seen was huge. And running parallel to all my other thoughts about how we would cope today, tomorrow and forever after, was this picture of the biggest book you’ve ever seen, and a giant hand turning a huge page with great finality, and the words in my head; “A new chapter is about to begin”. There was a hope and a thrill (like the old-fashioned sense of the word that doesn’t just mean excitement, but like a jolt of mixed emotions that pass through the body all at once) that just couldn’t be explained in that moment. Something was going to happen, and it was going to be big and amazing - the pulling together of so much that had gone before, and the unveiling of things we had never seen. I had no idea what it was, I only knew that it had to be from God because it was the most unexpected way to be feeling on that day in that circumstance.

And it really has been like that. The way people have pulled around us, the physical and emotional blessings we’ve been showered with this year, the way the children have flourished, the new friendships that have begun, the promises that we received in the past that we’re seeing coming to life now – really, it’s beyond amazing. Everything I’ve ever believed has been cemented deeper into me because I’ve seen it now as well as hearing about it.

I never thought we would have moved back to Morecambe and be doing what we’re doing now. I thought the only way to move forward was to move away, but when we decided to give it another go, I said to God (in that naive, self-involved way that we all do, as if we’re in charge and He’s not) that I couldn’t go back if everything was going to stay the same. I felt a real assurance that it wouldn’t be. And it hasn’t been.

He has changed so much in us that we are far more equipped to do the job now than we were before. He has kept people on the ground who have blown us away with their faithfulness, resilience and commitment to the shambles we left them in. And new people have come who have brought exactly what was needed into the situation.

So this is the first anniversary of our loss, our son’s promotion into glory, and the beginning of our new chapter. I wonder what the next year will hold.

Friday, 17 May 2013

New Life


A few weeks ago the kids planted some sunflower seeds in little pots. We watered them and waited, and then in various degrees of speed, they begun sprouting. As they did, several of them had little caps on like this;



As I peeled them off to let the leaves open and grow, I was surprised how complete the seeds still looked. My first thought when I saw them was that a sprout had grown through another seed that was waiting to grow, but I realised that would be a heck of a coincidence to happen over and over again. Obviously, it was just the remainder of the seed's shell. 

It hit me really hard how tiny the part that holds the component for making the plant grow actually is. Before it grows, the shell is hugely important. It's where the life pod - the bit that will become a plant - is birthed and protected. It's also what identifies it. I suspect that that the insides of different types of seeds probably look very similar to each other, so we need the shell to show us that its a sunflower seed, and not a daffodil bulb or an apple seed. 

But the shell is not where the life is. It holds it ready, then when its time for it to be released and grown, it breaks open and isn't needed anymore. It dies, breaking down into cells that turn into earth to give life to more broken seeds later on.

And yet we spend so much time on these outer shells. On what they look like, what they should be dressed in, how to beautify them. Trying to make them feel better when they crave something more, so we give in to appetites and indulgences. We worry about how to sustain them financially and keep up with the expectations of everyone else around them. We cling to them desperately, afraid of what might happen if we allow them to crack and be damaged. 

But they are not true life. They are only the precursor to life. And when they are finished with, that's when the true life begins. Something totally completely beyond comprehension happens, and these little brown and white round things give way to tall, bright green things. It makes no sense, but that's what it does. We've all seen it happen.

So what happens beyond death, I have no idea what that looks like. All I can imagine is something that looks like an improved version  of the world I see now, but I'm totally sure it's far more than that. As different from this world as little brown seeds are from tall, strong sunflowers. A million times better than anything we can comprehend. 



If we are planted in the right place, we will flourish, and become all that we were meant to be.

Wednesday, 24 April 2013

What Wasn't


As I wrote two posts ago, it’s been a strange few months in the Scholes house, with Richard struggling with lots of back pain, and visits to the doctors and physios to try and find out what’s happened. All his symptoms pointed to a slipped and ruptured disc in his back, which we anticipated and were trying to plan how we would manage church and family during the surgery and recovery time afterwards.

We were pretty thrown then, when he went for the scan and the nurse came back in a few minutes later, as we were about to leave, and said “There’s something unexpected on the scan, we’d like to do some more please.” An all-too familiar feeling rose into our throats as we looked at each other, pretended to be fine, and said “Of course, that’s no problem.” He went back into the MRI machine, this time with dye in his blood and for a longer amount of time, and then we saw the consultant who confirmed that although the discs were fine, something unusual was happening at the base of his spine. In the next few days, blood samples were taken, phone calls were made, high levels of protein were found in his blood, and a biopsy, which involved something like a hammer and a chisel akin to a mediaeval torture method, was taken. More scans were done, over every major bone in his body, and a blood clot was found in his leg. Nothing was left but to wait.

This is what we were waiting for: a diagnosis of myeloma. All the symptoms pointed towards it; there wasn’t anything else on the table. Myeloma is a rare form of bone cancer. It is less aggressive than other cancers and is ‘treatable’ – meaning the symptoms can be slowed with medication, and even virtually halted with a bone marrow transplant, but it is terminal. It always comes back, and the life expectancy once diagnosed is up to about seven years.

So the last few weeks, it has felt like someone punched us in the stomach every morning when we woke up. We've been chatting about ordinary things, like trips and meetings, then wondering whether we’ll get to do any of them or whether we’ll be back to living with suitcases by the door and emails from hospital rooms and never knowing what we’re going to do even a week in advance. We’ve had conversations about life insurance and mortgage payouts, and shed tears when we’ve talked about the kids’ educational future and holidays we want to do with them before it’s too late. He’s been thinking about who to train up to take over the church leadership from him, and he started giving his three year old daughter tips on how to pick a future husband.

And of course, we have prayed like the clappers.

Today, I had an amazing conversation with someone in our church who was waiting for medical test results and they had come back totally unexpectedly clear. I was crying and thanking God and whooping down the phone at the good news. When I hung up, I saw a text on my phone from Richard. All I could see were the words ‘myeloma in biopsy’ standing out to me from the middle of it. My heart went cold as a realised that this was what we were waiting for – the actual confirmation of the actual disease that was going to steal my husband. I read it again and was confused by the other words around it. After some of the slowest few seconds of my life, I realised that in front of the word was a big fat NO. No myeloma in biopsy.

No. Myeloma.

Now, I’m very aware that if it’s not myeloma, it’s got to be something else, and that my husband is still in a lot of pain, with something wrong with his spine, and a large blood clot in his leg, and too much protein in his blood – BUT right now it’s NOT terminal cancer, so, like my brother-in-law, who yelled so loud when he heard the news that most of Morecambe must have heard him, today we are celebrating that our future together looks set to go beyond the year 2020 and that it seems like we have just had a death sentence lifted from our shoulders.

We still don’t know what the future holds (and we are really glad for the clarity that has come to us in the last few weeks, asking ourselves where we would go and what we would do if we only had a short time left, and finding out that the answers were ‘right here’ and ‘exactly what we’re doing now’), but we now know what it doesn’t hold anymore, and that’s good enough right now.

And for whatever we do end up facing, this is what I wrote last week, when we were sure the worst was about to be confirmed:



Maybe.
It's time to do battle again. Not that we ever stop - life is a battle from birth to death - but sometimes the battle crosses from the internal and the unseen to the glaringly obvious, where the stakes seem higher and the end result more frightening. In reality, it's probably no worse or damaging to our future than what goes on inside of us everyday, but when the symptoms go public, so does the fight.

What do I mean by doing battle? Realising that there's a much bigger picture than the physical one we see in front of us, and that every thought, attitude and condition of the heart matters. It's not denying the reality of the frightening situation in front of you, but it's knowing that every tear cried does not go unnoticed, but is counted in the price of staying by your post when you feel like crumbling. It's not feeling strong all the time; it's allowing your frailty to drive you towards the ultimate stronghold, Who protects and comforts at all times. It's not claiming that everything in your life ought to be perfect because you're a good person; it's deciding (and redeciding when you feel like changing your mind) that it doesn't actually matter what happens TO you at all - it's what you allow to happen IN you in the meantime that counts. 

So we will fight again, despite feeling battle-weary, because we’ve now seen what God can do in the worst time, and that victory is not all we expect it to look like. We will do whatever it takes to stand firm and keep going, even if we have no idea what will happen in the future. What else is there? Really? Nothing that I want. So bring it on - we’re ready.

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." James 1:12 

Sunday, 14 April 2013

Disneyland Paris


We've just returned from a five day holiday at Disneyland Paris (yes, I wrote this two month ago. It's taken me this long to finally add the photos to it, due to a phobia of inserting and accurately aligning more than one picture into blogspot at a time. It's hard work and has taken me several goes. Do you hear me blogspot website managers? HARD WORK). (And don't get me started on the highlight of the text that can't be removed - it makes me want to cry. I only have OCD in one area of life and that's in published material. This is killing me.)

It was incredible. The time of year meant that it was pretty quiet (although pretty quiet at Disney is like peak season for most UK attractions) and so instead of spending half the days in queues, we were able to go from ride to show to meet'n'greet, etc, with only a five minute wait most of the time while we waited for the group in front of us to finish. I think we only queued for more than ten minutes about six times the whole time we were there. It was cold (though not as cold as it should have been) and it rained quite a bit but it was worth putting up with just to be there.

We took oodles of photos, of course, so here are just a few to show what kind of memories we made:


 Waiting to get on a plane. Although the older three boys have been on a plane before, they were too young to remember it, so this was a first experience for all of them really.


Rocky decided the emergency evacuation procedure looked like some kind of fun park in itself with all the slides and inflatable trampolines. He was disappointed when I told him we hopefully weren't going to be going on it.



The reason we got such a great deal: the twentieth anniversary celebrations.

The main guy himself, waiting for us when we came down for breakfast. We made him queue to meet us ;)

The only thing we actually had to  wait in a queue for was to meet the Disney Princesses. Baby totally bowled all of them over, chatting to them as if they were her best friends.

Manly kind of carouselling. 



She was desperate to see Minnie Mouse, so when we spotted her on the third day, we released Baby from her pushchair, and she flew through the crowd around Minnie and threw herself on her. I pulled her away and apologised, but instead Minnie waved the rest of the respectfully waiting crowd away, and brought Baby back instead for some fierce cuddles. Love how you can get away with anything when you're two.

Me and my boys on the Slinky Dog ride (you sit inside Slinky's spring).


 The biggest Buzz Lightyear you're ever gonna see.

 Turtle parachuting.

Loved the stained glass windows telling the story of Sleeping Beauty. 

Rocky meeting one of his favourite book characters. 

Just before filing missing child reports, we found them with Pluto. Apparently anybody wearing a Disney character costume is as safe as (but more interesting than) your parents, so if you see them, you're allowed to abandon your family in pursuit of them. It took a while for them to understand this is not true.

Jack Sparrow was brilliant. The benefit of off-season is lots of time at the Meet'n'Greets. He wouldn't let them go till they perfected their "aaargh"s. 

A favourite spot.

 Don't even know how to caption this. It's just too cute.



It wasn't our first trip to Disneyland.  Five years ago, for its fifteenth anniversary, it had a kids-go-free offer, and we got an unexpected chunk of money, so we decided to go. Turtle was six, Scooby and Ace were four, and Rocky was just six months. It was a busier time, so keeping them all occupied in the queues was really hard, but it was fantastic, and of course our experience stuck with us for a long time afterwards. We always hoped we could take them again in the future, but doubted we could afford it, and then with Scooby's illness, we couldn't plan holidays anyway.

When it was clear that Scooby's illness was a long-term thing, a nurse from our local hospital recommended we should apply for the Make-a-Wish Foundation, so we did. We put Disneyland at the top of the list, as Scooby chattered about it quite a lot, and we knew they often made special arrangements for the medical side of things, which was our only chance of getting insurance to travel abroad. Of course we didn't tell him about the application, but the more ill he got, the more the whole idea of Disney-related stuff seemed to help him through things. When he couldn't do anything other than listen to stories or watch movies, we got through loads of Disney books and DVDs, particularly the Pixar Shorts which he found hilarious. He frequently asked for MRIs because in the scanner, to help sooth the noise of the machine, he could listen to Disney soundtracks. Once we understood why he kept asking for brain scans (!), we downloaded Disney music tracks for him to listen to in his hospital room. And the last few times he was able to interact with his siblings, he would ask them to get on his bed and they would all pretend to be at Disneyland - to be going on a boat on the way there, and then on the different rides.

I was gutted when we got a call from the Foundation to tell us that they were going to grant his wish and I had to tell them that he'd died two weeks earlier.

So when his Child Trust Fund was released to us a few weeks later, we decided that given the choice on what we spent his money on, he'd have wanted us to go to Disneyland. As it was now the 20th anniversary, there were more special offers on, but although we could now afford a large chunk of it, we would need around a thousand pounds to afford the rest. We put the decision on hold while we decided whether we thought we could save the rest somehow.

A few days later we received a letter in the post from a friend of my brother, who we had never met, but he had been following our story and praying for us along the way. He was one of the trustees of a charity that his grandfather had bequeathed, which would help families with sick children. He'd brought our situation to the other trustees and they had decided to grant us some money to spend specifically on treating us as a family to something special. The amount was one thousand pounds.

We were overwhelmed with the generosity of strangers, and the specific provision for something we didn't need but had wanted. It was incredible, and one of the many ways in which God kept revealing His hand to us in the difficult first few months. We booked the holiday, and then had the added excitement of waiting to tell the kids. On Christmas Day, we had wrapped up some of their Disney toys attached to letters, so they were confused to open a huge exciting-looking box only to find their existing toys inside, until they rearranged them to work out what they said!





Thanks to even more generosity of family, and waiting till the last minute for a great deal, we changed at the last minute from driving to flying. Although Turtle and Ace had flown a long time ago, they were too young to remember, so it was a first for all of them to fully experience going on an aeroplane. In Rocky's words: "It made me feel all tickley inside - I think my tummy likes flying!"

I thought beforehand that it was going to be tough to be there without Scooby, and that we might spend some of the time really upset that he wasn't there. But it felt really different for a start. Turtle and Ace were five years older, so they saw and experienced things really differently to how they had last time. And five years ago, we only had three children who could join in and enjoy the experience - this time there was four sets of reactions to watch instead. Plus we'd skipped quite a few things last time because they were "girly" so this week we found all sorts of new attractions that we hadn't seen before, and the boys definitely enjoyed them more than they thought. (We didn't make them queue up to meet three different princesses though - they ended up going on the Star Wars simulator three times instead!)

A couple of times I got a hit of emotion - once as the parade came round the corner for the first time, and also when we were buying their toys on the last day ready to leave, because they were two of the things I remembered so clearly from five years ago, that it was like having flashbacks.

But apart from that (and the plane ride home when it all hit me again), we didn't spend most of our time mourning for him. Of course I thought of him loads, and of course I wished he was there, but it was me being able to experience his reactions that I missed. I don't feel at all like he was missing out on what we were getting to do, partly because I know he DID get to go five years ago, but mainly because I know that what he's experiencing right now far outweighs any trip to Disneyland or any other pinnacle of childhood.  It's not for his sake that I feel any sorrow, but for mine. I feel so impatient to be where he is, and so relieved for his sake that he's not limited anymore (I can't imagine what stage of his illness we'd have been able to take him at if things had worked out differently, but I'm sure there's loads of stuff he wouldn't have been able to do). I'm so glad we were able to treat the other four children to something special on his behalf, and for the way things seemed to come together so well to make it all happen. We've been incredibly blessed, and we are incredibly grateful.