Nothing much to report as I’ve been preserving energy for the next couple of days. One notable exception is that Graham, Jennifer and I went out on a twofold mission today to:
- find some silver trainers for me that I may or may not need on Saturday; and
- buy some presents for Leo for his birthday on Saturday as, although he will not remember, I will feel guilty about not getting him anything. Besides, Jennifer has the memory of an elephant and would undoubtedly tell him in years to come that he got nothing for his first birthday!
We went to the Metro Centre and succeeded, which was a relief. More importantly, I got to share some normal family time with my girl, who was excited to see the sparkly Christmas decorations. Plus, although I could blame the Squatter, anyone who knows me will realise it’s reassuringly normal for me to engage in last-minute panic-buying! I can’t share details of what we bought Leo as he might find out and that will spoil the surprise!
On the health front, I have had increased energy levels yesterday and today. The key, I think, has been a two-hour nap in the middle of each day. I confess that I’ve felt for years like I could do with a nap in the middle of the day. It’s only taken being diagnosed with a brain tumour for those around me to allow me to succumb. Living the dream!
*Kudos to Claire Fox for that suggestion.
PS Here are my super silver trainers. Spot the discrepancy that I corrected as soon as I got home.
Graham and I finally had our birthday date in a hospital cafe two weeks after his birthday. Today’s venue was the Coffee House at the Freeman Hospital and was a change from our previous Costa/Subway dates at the RVI. However, given that I’ll have at least 31 appointments at the Freeman before the end of January, it’ll soon be passé too, no doubt.
The Northern Centre for Cancer Care at the Freeman was where we met my consultant oncologist, Dr M, and one of the Specialist Nurses, Katie (who was also at our initial appointment with Mr H and has popped up from time to time). I would still be meeting my oncologist at the Cancer Centre if my tumour was still classified as benign. Nonetheless, to walk into a centre with the C word in the title was a sobering reminder (not that I needed it) that I am now one of millions of people living with the Big C. Continue reading “The Big Ol’ Blue”
Since Rach’s last post we have enjoyed a somewhat more settled existence. Although Rach has had four seizures in that time (two on Friday and one each on Saturday and Sunday) they have been short, if not sweet, and, touch wood, have not caused any lasting issues.
Today is the first day that Rach has been amongst her people for the majority of the day, only now taking a rest before the return of the little people. On the strength of her reviews, we’ve all moved into Casa Turner which has significantly increased family play time, much to the particular delight of my daughter.
Rach has asked me to let you all know that she has not been ignoring all of your kind messages, she’s simply not had the energy to respond. I’m now receiving instructions so it shouldn’t be long!
Tomorrow we meet Rach’s Oncologist to discus what comes next. We’ll let you know.
p.s. The latest in post-surgical Hannibal hair dos
After 25 days in hospital, it feels good to be free. I felt very tired when I got home on Wednesday afternoon and, to be honest, have felt shattered ever since! I have had some good times with the family in between the naps. That’s the best thing about being at home: being able to see the kids as often as I feel up to it. In hospital I was limited to, at most, a couple of hours a few times a week because the logistics didn’t work on days that they were in nursery.
Jennifer was very excited to see me. Leo smiled and then wandered off to get up to one sort of mischief or another. He currently has a love for putting things in the toilet. Nice. He didn’t like being held by me in hospital, not least because he’s become a real Daddy’s boy, but also because it’s not much fun being held (constrained) by someone in a bed when you’re 11 months old, have learned to walk and are feeling like you need to explore! He held his arms out to me yesterday, though, when he was incarcerated in his high chair and I was standing next to him. I recognised that I was being used, being the closest one who could free him, but I’ll take that! Continue reading “Free…”
Evening all, G here.
Just a quick note to let you know that Rachel has been let out for good behaviour and is once again residing Chez Turner, along with yours truly and the little people.
Whilst tired, Rachel is in good fettle and I for one enjoyed seeing my little family reunited at long last.
On the seizure front, I’m averaging one a day. I started my new anti-seizure medication (lamotrigine) on Sunday. I’ll be increasing the dose every two weeks over the next four weeks; meanwhile, I’ll be weaned off the chocolate fire guard (phenytoin). Mr H agreed with me yesterday morning that tomorrow is a realistic release date.
On Sunday, I felt absolutely wiped out, so didn’t really do much (to be fair, I don’t do much any day except read Trump-related articles, and that’s not doing my health any good). Anyway, I awoke from a nap to find my husband in the chair next to me, which was a sight for sleepy eyes. Our date afternoons have fallen to new lows when I’m asleep for half of them and, during the other half, the highlight is going for a walk along the corridor. How I yearn for our Costa and Subway dates! Continue reading “A Seizure a Day Keeps my Home Far Away”
The neurologists have decided to phase out phenytoin from my morning cocktail. The latest blood test has shown it yet again to be at a sub-therapeutic level (the technical term for being as useful as the title of this post). I don’t know what my body is doing with the higher-than-usual amount of phenytoin going into my body daily but it’s clearly not using it wisely. They are going to introduce my body to another anti-seizure drug and hope that it’s a match made in heaven to cease the seizing.
On that basis, we’ll see how it goes over the weekend (seizure and side-effects wise) and then I can hopefully be transferred to Chez Turner on Monday/Tuesday. I’ve thought about it a lot over the last week or so and, while it’s not what I’d choose (although, that said, given a choice between the seizures and the Squatter, it’d be no contest), even if the seizures don’t stop entirely, I’d take a seizure once a day (on average) as long as they remain self-terminating and last a minute or two. Mr H said last night that I need to prepare myself for such a scenario (great minds think alike). Continue reading “Chocolate Fire Guard”