You Can’t Live Indefinitely Indefinitely

The kids came into hospital to visit me a week gone Sunday. Both of them were excited to see me and each had a good look at my head. G had reminded them in advance that my hair had been cut and I would have a plaster on. The previous week when I had returned from my appointment with Mr H to discuss further surgery, I had shown my Mam the photo of me and Mr H. The kids had wanted to see the photo too so I explained that I was sitting next to my doctor, who was going to take out the tumour in my head that shouldn’t be there. It’s difficult to know how much to tell them but we try to explain things simply but honestly without overloading their brains. We have enough of that in the family already…

It was great to see them and to spend time together as a family, albeit in the unusual surroundings of the hospital. Towards the end of their hour-long visit, I got very tired, not least because it was the first time in three days I’d been out of the ward. After popping outside for some welcome fresh air on my face, we returned to my ward. Jennifer had brought in her reading books from school and she read one to me before they left. I was pretty much asleep before they’d even left the room. It was more than worth it for an hour to cherish.

S[o]nny Delight

I spent a lovely couple of hours in the garden on Saturday. Jennifer was out with my Mam making important decisions on which sandals to buy so I watched my boy play in the sunshine. He used some blue rope to re-enact some rescues that are based on Fireman Sam’s finest moments with a touch of Paw Patrol thrown in. The kids’ new Paw Patrol caps were perfectly sized to keep the sun off my freshly shaven head. It was lovely to feel the sun on my back but even better to watch Leo play, chat to him about how each rescue was going and seeing how he’s grown up even in the last couple of weeks. It was a special couple of hours before tiredness overcame me and I retreated happily back to bed.

It’s very different to be recovering from surgery with a five year old and an almost two and a half year old. Last time around, I had an almost one-year old and an almost three-year old. Then, I couldn’t do much with Leo. Both are now accustomed to my dancing leg, tiredness and doing things without me, which is both a source of sadness for me and a sense of pride as to how they’ve adapted to our “new normal”. Kudos and endless gratitude to the Triumverate who ensure that Jennifer and Leo can enjoy as normal a childhood as is possible. 

Cats in the Cradle

On Sunday evening, the kids chose to come into our bedroom for me to read them their bedtime stories. First up was Leo with a non-fiction book about different emergency vehicles that he chose from the library a couple of weeks ago. I then read the book that J had chosen about different mega-beasts. When I got to the lion, I said that they were my little cubs, to which Leo immediately got into the role. He started crawling over me and around the bed and meowing gently, which made me laugh. J then saw that Leo’s role-play was making me laugh and joined in with gusto. Soon, they had me hanging off the edge of the bed crying so much with laughter that I almost couldn’t breathe. The more I laughed, the more they crawled and mewed.

De-Mob [Un]happy 

The animal-stickers splint and the wheelchair are back in our lives, after a fair few months without them. My ankle was already in a bad way after a seizure repeatedly clicked my ankle out of whack a few weeks ago. I had reverted to using the splint (even around the house) just before my op. It is frustrating that I’d built up a degree of independence that’s now gone. But compared to my assumption a few weeks ago that, post-op, I would never be able to walk again, I’m doing ok. 

Silver Linings

Mr H stapled 20 silver birds to put my scalp back together, which is four less than he used for my Awake craniotomy. It’s a strange but not unpleasant sensation to have staples removed from one’s scalp, which was done yesterday.

At least one good thing came out of having another op: I got to use the decadent talc-like dry shampoo that my friend had bought me after my first op. That kept my hair manageable until I could wash it for the first time today. 

Here are some photos of my plasters and my staples both on/in and off/out of my head.

This was earlier today after a luxurious hair wash.

There is already some stubble that can be used to fashion some kind of “style”. Any ideas as to what said style could be?!

A Tissue, A Tissue

As with my previous craniotomy, some tumour tissue is going to Professor Cunningham at Newcastle University to be used for his research into brain tumours and seizures. This time, some is also going to the 100,000 Genomes Project. Does anyone else want some? There’s plenty to go around!

Unexpected Sliver of Something Amidst the Expected Doom and Gloom

Graham and I went back to the RVI yesterday afternoon to see Mr H. Parts of the tumour that Mr H removed have been confirmed as Grade 4 astrocytoma, which is the same grade and type that my brother had*. That wasn’t surprising because Mr H and Dr M had each told us that it almost certainly would be.

Mr H estimated that about 20-30% of the tumour that he removed was grade 4. That is a lot lower than I expected so I’m taking that as a not-completely terrible thing.

Mr H explained that Dr M would be in touch to talk about further chemo, which will be PCV rather than the temozolomide I had for six months last year. I need to wait a few more weeks before embarking on chemo so that I can recover as much as possible from my op. I already feel a lot better than when I started radiotherapy six weeks after my previous craniotomy.

No Pain [A]gain

Mr H told us after the op and again yesterday that there’s a big cavity where he’s cut into my left ventricle. Immediately after the operation, I could feel the cerebrospinal fluid (CSF) sloshing around when I moved my head. It felt as weird as it sounds and it hurt like hell. Thankfully, that pain was excruciating (even with the benefit of a shot of Oramorph) for only a few days and has now gone completely.

To finish this blog before it finishes me, I’ll end on a lighter/darker** note.

On our way to hospital on the day of my op, the vehicle below overtook us. It then undertook the car in front of it. An undertaking undertaker. In my wildest dreams, I could not have made up seeing such a thing. Thankfully, for whom that hearse rolled, it wasn’t me!

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PS Today’s blog title is inelegant but then so am I! I used it yesterday in telling G why he should stop slacking and return to work.

* It’s also the same type of tumour that Tessa Jowell has.

** Depending on your gallows humour threshold!

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