The Brain Tumour Charity is the leading funder of brain tumour research in the UK, spending over £18.3 million to date on pioneering projects that will help adults and children with brain tumours. It is currently funding 255 researchers at 48 institutions in 12 different nations. See more information here.
After 8 seizures in about 20 hours just over a week ago, after which my anti-seizure medication was increased, I have had a relatively good week or so with only a couple of seizures. My steroid dose went up for a few days to give me a bit of a boost and is now being reduced gradually again. The dose has gone down again slightly today so let’s hope it wasn’t the Steroid-reduction programme that was responsible for the return of the multi-seizure days. On average over the last few months I’ve had about a seizure a day, which the neurologist said, for me, will be about As Good As It Gets.
This is My Moment
I remember the best advice I received before our Wedding Day, which I have since passed on to almost everyone who has a celebration of one form or another. The advice was to remember to look around for 10-20 seconds every hour or so, take it all in, relish it and mentally “clock” the scene. I know people say the Big Day flies so quickly, which it did, and that was invaluable practical advice to take a breath and enjoy the day “in the moment” rather than letting it go by in a blur. I feel like that’s what I’m doing on a daily basis, particularly on good days, but also in the little “wins” on bad days.
I am grateful for every “win”, however long or short, because I don’t know how long it will last and when the next window will come. That makes me (generally) appreciate them all the more in the moment. I say “generally” because sometimes, even when I’m doing relatively more than I am usually able to manage, I get frustrated that I can’t do more.
A Moment Like This
These are some of the wins that I’ve enjoyed over the last week:
- sitting at the table with my family for dinner a few times;
- sitting outside in the sunshine watching the kids play in the garden and on the trampoline;
- reading to both children before bed;
- Jennifer sitting next to me and reading her “first reader” books (can anyone point me to a crash course in phonics so that I can help her, I fear that I am currently more of a hindrance?!);
- sitting in the living room spending time with my hubby and parents;
- sitting in the living room rather than lying in bed to “receive” visitors for the first time in literally months;
- a couple of short walks immediately followed by a wheelchair roll around the block just to get some fresh air – one such roll included G carrying Leo in a back carrier while pushing me and, for some reason, we chose not the flat block to go around, like we usually do, but the one that ends with a very steep hill, which just about finished off the silver fox!; and
- a trip to the Metro Centre in which I just bought some basic toiletries while we bought the previously-cautionary-spender “I don’t need anything” Mr Cole a couple of jumpers and some Tom Ford face scrub (to add to the TF aftershave and deodorant stick he already had – he has more TF products now than I do, which I might need to rectify the next time we go out!).
Inevitably, in between these wins were periods of tiredness, seizure activity and brain fatigue when Brain Delayed Play. I will not bore you with repetitive details of those here in my “Oh Happy Day” section.
Back to the Future
Sometimes, but not always, after the wins, my thoughts inevitably turn to the immediate future as to when I’ll next be able to enjoy these little moments. As I start the second cycle of chemotherapy next week, I’m conscious that I’m likely to be tired more so than usual. My desire to do as much as I can before the chemo re-starts is tempered by the knowledge that, if I overdo it, I will tire myself out completely. This not only puts me at risk of triggering seizures but will potentially weaken my immune system further and give me less chance of coping with the side effects of the chemo. So it’s all a question of balance but, sadly, I’ve got no scales to weigh it all up for me and instruct me how much I can do each day!
In the medium-term, I know from the nurses that each cycle of chemotherapy will make me increasingly tired as, like the radiotherapy, it builds up cumulatively. I therefore guess that the risk of seizures will accordingly increase. I coped with the fatigue caused by the radiotherapy by resting for most of each day, which didn’t give me many “wins” on a weekly basis. I’m hoping the same strategy will work with the chemo.
Sub-consciously, my diagnosis is undoubtedly my primary motivation to enjoy the wins where I can find them. That said, I honestly don’t think consciously on a daily basis about how “long” my long-term future will be. When I do think about it, it’s usually more peaceful than panicky. They’re thoughts for another day, though.
It’s All About [Me]
Moving seamlessly from one McFly section to another, as I mentioned in a recent post, I agreed for the Brain Tumour Charity to send a press release out regarding me and my brother as part of Brain Tumour Awareness Month. I was expecting some coverage towards the end of last week. So far, just to completely throw myself into this PR lark (it’s for charidee after all), here is the story so far….
1) As expected, both Heart fm and Smooth Radio included a short segment on their respective news bulletins during Thursday’ morning shows (which, for both stations, is provided by the same newsroom).
3) Newcastle’s Chronicle has a lovely article in today’s paper, which was uploaded online yesterday evening. I couldn’t help but find the wording of the Chronicle’s Facebook link amusing in my gallows humour kind of way. As I said on Facebook:
Not the words you want to see above your photo! Not that the words below are ones you’d want to see, of course, but the words above might make people think I’ve done something ghastly!
4) The Chronicle’s story has itself been picked up online by The Sun as well as other websites that I honestly hadn’t heard of.
Quote of the Week
When I was telling Leo off the other day for throwing his food, I added “actually, you shouldn’t throw anything”. Jennifer helpfully corrected me by saying “you can throw balls, though, Mammy”. I agreed that she was right. The pedant in me was so proud of my four-year old for spotting the inaccuracy in what I’d said. However, the simple messages to Leo about what he can and can’t do will perhaps get lost in the midst of all the caveats. That said, Leo currently just laughs, shakes his head and then runs away when anyone tells him off so maybe the caveats approach is worth a go!