(Written: 14th January – never published)
I have not written anything for a few days in the hope by keeping my phone at bay in the wee hours of the night (ie switching off when I go to bed) will help me sleep. Unfortunately this is not the case. Good old mate dexamethazone (steroids) the drug to help reduce any potential swelling of brain tissue therefore the possibility of seizures is also controlling my sleep. It’s EXTREMELY annoying. As soon as I wake up I’m praying like hell it might be at least 2am plus. But tonight alas, like the night prior – 1:45am. After only going to bed at 11:30…2hrs… oh gee what a sleep!
Considering I can’t sleep I’m about to get up, settle on our couch instead and watch some tv. I did this last night too. At least give Seany some sleep, he deserves it – running on empty being my número uno. Along this week, with my ever so marvellous mother in law Robin who along with my mum have basically adopted the boys and do it with such ease. They take turns at the moment of a week on, week off. I couldn’t be more lucky and thankful to have them. The family support is off the charts. We are so very lucky in that regard. I don’t know what we would do without them. Thank you Mum & Rob!!
Ok so I got a little off topic… back to the middle of the night TV…Did you know that better homes & gardens is on at 2:30am?! Fast Ed (I think his name is) was making some amazing looking slow cooked pork [which I must remember to google receipe] and some delicious looking dumplings. Yummmm. The one good thing to come out of it, my brother in law Jamie, last year became a dumpling making master and he’s now agreed to make & deliver some to me today. Thank you Jamie. One bonus of being unwell, your wishes are your commands and everything is pretty done for you – got to have some bonuses of being unwell doesn’t there? It’s bloody unfair otherwise.
To begin with, this made me a very unsettled (the giving & generosity of people), but after meeting with my Radiation Oncologist 2 days ago and getting the ultimate reality check of this (excuse the French) fucked situation I am in, I am not feeling guilty anymore. All of a sudden I have some clarity in my life and I think when they removed part of the tumour they may have removed my inability I’ve suffered for years in making decisions. Bonus. Or it’s just dawned on me that I now above anytime in my life I just need to say it as it’s is, people want to help and rather than dismiss it for feeling guilty, take it. That’s the one thing people can do and they want too (also a hard concept to grasp).
I’m unsure if you have read or aware of my go fund me page/s. But they have gone insane and the donations are more than anything I would have expected. From family, beautiful friends, work colleagues, old friends, people I have NEVER met and even random anonymous donations here and there. I never expected it would raise this much money. It’s absolutely mind blowing. Still unsure exactly what we will do with the money apart from save it for later this year and use it in times of desperate need whilst I’m not earning an income. A few new items to help me along the way to make this process as painfree for myself and my family and fit our home with anything that will make this journey easier.
Shit gets real in February. Which I guess is the time to now fill you in….
After meeting with Ron Freilich (aka Ronnie) my Radiation Oncologist specialist on Friday. The plan for 2017 goes a little like this….
6 weeks of radiation (5 days on, 2 days off – basically a working week with weekends off). Followed by 12 months (yep 12 months 😩) of drug therapy (chemo) tablets I take from home, 5 days on, 23 days off. Apart from the reality check and the stab to the heart and extreme sobbing and lots of “it’s not fucking fair” crying/yelled. I’ve got to be thankful I’m still here, living, breathing, talking & enjoying life with my boys.
Look it’s not ideal, but the whole things not ideal. I was hoping/wishing that this surgery was to be cut & dry. Remove overgrown golfball lump, sow up head. Move on. But no. That’s ok though, 2017 is just now a write off and I’m planning on 2018 being my year.
I’ve already got some grand plans for 2018 (got to have something to look forward too!!) which include, a bloody big party to celebrate the end of the shitty year which will also include a renewal of my & Sean’s wedding vows 💙. Something I would have loved to do, but I know Sean previously would have never agreed too. But now in this situation he has to agree. Bonus. I’m that EXCITED. And now both our beautiful boys will be able to take part too.
Although this time we will not be paying for you all (sorry haha), and I’ll be doing a fundraiser to help raise awareness and funds for Brain Tumour/Cancer Research. I’m thinking cocktail party. Anyway I’m getting carried away. I’ve got plenty of time to plan this event. Just thought a good time to mention it.
Anyway that’s enough for now it’s now 3:16am and I may attempt some more sleep. Please brain be kind.
Love, Don x