Making a bucket list?

I'm sure everyone knows about making a bucket list (a list of things we want to do before we "kick the bucket") and I'd thought about it before but never got around to it. Now we are in a situation where we really should be making a list of things to do before Tahu leaves us but I can't do it. We won't be making a bucket list. There's a bunch of things we want to do and we will be doing a lot of them in the next 1-2 years for sure but I absolutely cannot bring myself to sit down and write the things we want to do before he dies. We will do the things we want and then we will think of more things and we will try and make as many memories as we can but it won't be from making a list.

Because what happens when the list is finished? What happens if we don't finish the list? Nope a bucket list isn't something we have any desire to do.

Also the things we want to do aren't always the big tick box things you know? Sure we want to go to a football match in England and visit certain countries and all that but we also want to just have great times with the kids and laugh at stupid things. Or like the other day watching Tahu and Knox take out the bath, now that's a really special memory that I wouldn't have been able to put on the list.

I'm not sure I'm explaining properly why I feel so strongly against making a bucket list for Tahu. Maybe it's because it makes it more obvious that we are on limited time. And how do you possibly plan to fit 50 years into 5? And how do you narrow down what it is you want to do when a lot of what you want is just time together to be a family? And for your kids to remember their dad? And how do I put on my bucket list that I just want to see what Tahu will look like as an old man?

Running a marathon

I have this image of Tahu running an ultra marathon in some crazy difficult location but the whole way is lined with people cheering him on. He has to run the race but he has so many people cheering, giving him water and supplies, making sure he doesn't feel alone in this. Knox and I and I'm sure others will be there with him almost every step of the way and yes maybe he could run this race on his own but he doesn't have to. Can you imagine the difference between running a race with your loved ones cheering you on or running it and the crowd has all gone home? This is what's happening for Tahu. He's running this crazy long race but he's not alone and he won't ever be and we will be cheering him on and supporting him the whole time right until the end, whenever that is and no matter what it looks like.

How did we get here?

I don't really know to be honest. Well I mean I know the details and the moments that lead to this point but I don't know how this happened. I'll try and start at the beginning. 

On Friday 24th February Tahu went to our GP as he had been having migraines and an incident of not being able to talk. He passed her assessment but she was concerned enough to send him for a CT scan (and marked it semi urgent).  On Monday February 27th Tahu was called at 1pm saying they could do a CT scan for him at Southern Cross hospital at 3.30pm. By 3.45pm they had told him he wasn’t allowed to drive and they were calling him a taxi to take him to Christchurch Public Hospital. He was admitted immediately. They had found a mass in his brain which they estimated at the time to be the size of a golf ball (after surgery we found it was actually more like 7 golf balls!). He spent the rest of the week in hospital having tests including a standard MRI, a functional MRI and speech, occupational and physio therapy assessments. 

At the first meeting with Tahu’s surgeon we learnt that the original tumor had been there since Tahu was very young as it has caused the bone in his skull to change shape and this only happens pre 13. This is something usually picked up in childhood due to black outs etc but this never happened for Tahu.  A second tumour had now started growing from that original one and that was what was causing the migraines and speech issues.

He was scheduled for surgery the following week but allowed home in the meantime which was such a relief for all of us.  Tahu had surgery on Tuesday March 7th to have a biopsy taken of the tumour. A biopsy sounds small but it is most definitely a big deal when it’s in the brain. He ended up with 22 staples and a piece of bone removed (and put back) about the size of a biscuit. He spent a day or so in the special care unit and then was moved onto the ward which was great cos he could actually get some rest there. Much less activity! The next morning we were told he would have to stay in for at least another night but that we could take him out for a couple of hours so we organised for my parents and Gail, Tahu’s mum to bring Knox to Hagley Park between the Museum and the hospital so we could have lunch together in the sun. This time we didn’t have to use a wheelchair (well we just didn’t ask if we had to) so it was a lot easier!  And then when we got back Tahu’s nurse came over and said Tahu could go home! Of course it was a couple more hours before he actually got to go home but it was still awesome news! We spent the next week or so at home waiting for information from the hospital which was tough but got easier the longer it took. I was able to catch up on work and Tahu watched Breaking Bad and a lot of sport! 

At 11am on Monday March 20 we met with Tahu’s surgeon to talk through his diagnosis and treatment options. I know everyone was hoping for the best but that isn’t what we got. The short version is that he has a grade 4 Glioblastoma Multiforme which is very aggressive. Actually it's the most aggressive brain cancer you can get. If he has no treatment he will only have weeks, maybe months. With treatment it will still grow back. There is no cure for this, just treatment that keeps it at bay for 9-12 months at a time.

The longer version is this. There are two tumours, one that has been there a very long time and has been low grade and has now changed to being mostly high grade. The second one is high grade and has grown from that original tumour and been there probably 6 months. The tumour looked very different to his brain and the parts of the brain they were touching aren’t being used much, if at all, so they were able to remove 98% of the tumours. This is huge! To be able to have them operate is a big enough deal on it's own but to have them get 98% was nothing short of a miracle.  Tahu recovered so well from the surgery. He was home within about 4-5 days and while he had speech problems and lost his "filter" (said and did things he would never usually do) that was all cleared up within about 3 weeks.  After 4-6 weeks of recovery Tahu started a double treatment of radiation 5 days a week and chemo 7 days a week for 6 weeks. He managed this amazingly with a few side effects but nothing we couldn't handle. Now we are in another month off before he starts 6 rounds of chemo (1 week on, 3 weeks off each cycle). 

We have a Facebook page where the details of how Tahu is going will be but this blog will be where I write my stuff. It's both for me to record what's happening for me but also gives others another perspective of what we are going through. I think there will be plenty of mentions of my role as a wife to Tahu, mum to Knox, pregnant with another baby, my own personal experiences and who knows what else. This year is something we absolutely never saw coming and I think it's important to remember and learn from it as much as it hurts.