2 Cor 12v9

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...