Good afternoon! Yes, here I am, on Friday afternoon, wide awake. Well, maybe not
wide awake, but definitely functional.
This week has all been much the same as last, only with sensible food and
lots of water, which seem to have done a huge amount of good.
There's still not much in the way of hunger, so I'm letting the clock
tell me when to eat. I'm drinking constantly. The result is no
feeling really bleurgh, which is great. Another result is that there are some chocolate biscuits in the house that have been here more than a week, because they haven't been singing at me to eat them. Oh, and apples are really good (normally when there are chocolate biscuits and apples in the house at the same time, apples don't get eaten first).
I've had
a couple of very mild headaches - single dose of paracetamol sees them
off - I can't decide whether they are hunger, hydration or
result-of-treatment (local inflammation). Occasional mild nausea still
quashed by ginger biscuits, a fair bit of tiredness, but
I'm doing my best to save it until bedtime and sleep really well. It's still unpredictable in that one day I might be
really tired and the next more awake but a bit more nauseous. In
general it worsens over the week as you might expect. Looking forward to my two days off, but feeling better than this time yesterday.
This week I saw the orthoptist and ophthalmologist
on Monday. The orthoptist said that she had suspected that the scan
would reveal something - that the problem was neurological - but it was
not what (or where) she expected. She did some
of her tests a couple of times, while nodding and smiling, and said,
'It's interesting, and I'm learning!'
The ophthalmologist appeared to be much more
surprised with how this turned out - he's probably disappointed that
I'm not a one in a million ophthalmoplegic migraine. He had some praise
for my optician, and seemed staggered when
I told him that I was my optician's fifth brain tumour. He asked if he
could write me up as a case study because of being an 'interesting
presentation', which I said was fine so long as I could have a copy
please!
On Thursday I had my first review with the
oncologist, and that took all of about three minutes - pretty much just
checking what side effects I had (not many) and how severe (hardly at
all, i.e. none bad enough to need a prescription). The oncologist
did say that when she looked closely at my scans during planning, there
was a bit more meningioma there than she originally thought, so the
volume being treated is a bit larger. As a result, there might be more
headaches and/or tiredness than initially thought,
but we'll deal with those as/when/if it becomes necessary. From the
top view, the area being treated looks enormous, but then she showed me
the side view and it's absolutely tiny in that direction!
In logistical terms, it's all been pretty good. No problems with parking (and it's cheap, as they do a 7-day ticket for people having more-than-one-day-in-a-row treatment, for £3.40 [for the whole 7 days]). I
think about 20 minutes late is the latest any appointment has been, most
have been within five minutes of the due time and I've even been called
in early on one occasion. There are two
machines that do the type of radiotherapy I have, and probably four
times I've been nabbed by the machine/team other than the one scheduled - I
think if one is running late, the other helps out. As a department, they see about 200 people per day over their 8 machines, so they need to keep getting people through! Today we had the fun
that the machine was having a strop, and it didn't
want to do big scans. The radiographer said it would be fine for me,
as my line-you-up CT is only 7 slices (told you it was short in the side view!)
which it did fine. It did stop twice during my six-ish minutes of
treatment. They just took me out and put me back in
again, which I assume is the TomoTherapy equivalent of 'switch it off
and switch it back on again'.
And that's that. Two weeks down, four to go.
"Peak tired” (or should that be "trough”?) is expected to be about two
weeks after treatment finishes, i.e. about six weeks away, but from then
on everything should improve.
Some advanced warning: Addenbrooke's Charitable
Trust (their equivalent of what many hospital have as a 'Friends of ...'
organisation) currently have a campaign raising money for their
Brain Tumour Research Fund. I suspect I may have to think of doing
something silly and demanding you all give money at some point. I'd do a
sponsored sleep if I thought anybody could be persuaded to
contribute to such a thing
Week 2
Good afternoon! Yes, here I am, on Friday afternoon, wide awake. Well, maybe not wide awake, but definitely functional.
This week has all been much the same as last, only with sensible food and lots of water, which seem to have done a huge amount of good. There's still not much in the way of hunger, so I'm letting the clock tell me when to eat. I'm drinking constantly. The result is no feeling really bleurgh, which is great. Another result is that there are some chocolate biscuits in the house that have been here more than a week, because they haven't been singing at me to eat them. Oh, and apples are really good (normally when there are chocolate biscuits and apples in the house at the same time, apples don't get eaten first).
I've had a couple of very mild headaches - single dose of paracetamol sees them off - I can't decide whether they are hunger, hydration or result-of-treatment (local inflammation). Occasional mild nausea still quashed by ginger biscuits, a fair bit of tiredness, but I'm doing my best to save it until bedtime and sleep really well. It's still unpredictable in that one day I might be really tired and the next more awake but a bit more nauseous. In general it worsens over the week as you might expect. Looking forward to my two days off, but feeling better than this time yesterday.
This week I saw the orthoptist and ophthalmologist on Monday. The orthoptist said that she had suspected that the scan would reveal something - that the problem was neurological - but it was not what (or where) she expected. She did some of her tests a couple of times, while nodding and smiling, and said, 'It's interesting, and I'm learning!'
The ophthalmologist appeared to be much more surprised with how this turned out - he's probably disappointed that I'm not a one in a million ophthalmoplegic migraine. He had some praise for my optician, and seemed staggered when I told him that I was my optician's fifth brain tumour. He asked if he could write me up as a case study because of being an 'interesting presentation', which I said was fine so long as I could have a copy please!
On Thursday I had my first review with the oncologist, and that took all of about three minutes - pretty much just checking what side effects I had (not many) and how severe (hardly at all, i.e. none bad enough to need a prescription). The oncologist did say that when she looked closely at my scans during planning, there was a bit more meningioma there than she originally thought, so the volume being treated is a bit larger. As a result, there might be more headaches and/or tiredness than initially thought, but we'll deal with those as/when/if it becomes necessary. From the top view, the area being treated looks enormous, but then she showed me the side view and it's absolutely tiny in that direction!
In logistical terms, it's all been pretty good. No problems with parking (and it's cheap, as they do a 7-day ticket for people having more-than-one-day-in-a-row treatment, for £3.40 [for the whole 7 days]). I think about 20 minutes late is the latest any appointment has been, most have been within five minutes of the due time and I've even been called in early on one occasion. There are two machines that do the type of radiotherapy I have, and probably four times I've been nabbed by the machine/team other than the one scheduled - I think if one is running late, the other helps out. As a department, they see about 200 people per day over their 8 machines, so they need to keep getting people through! Today we had the fun that the machine was having a strop, and it didn't want to do big scans. The radiographer said it would be fine for me, as my line-you-up CT is only 7 slices (told you it was short in the side view!) which it did fine. It did stop twice during my six-ish minutes of treatment. They just took me out and put me back in again, which I assume is the TomoTherapy equivalent of 'switch it off and switch it back on again'.
And that's that. Two weeks down, four to go. "Peak tired” (or should that be "trough”?) is expected to be about two weeks after treatment finishes, i.e. about six weeks away, but from then on everything should improve.
Some advanced warning: Addenbrooke's Charitable Trust (their equivalent of what many hospital have as a 'Friends of ...' organisation) currently have a campaign raising money for their Brain Tumour Research Fund. I suspect I may have to think of doing something silly and demanding you all give money at some point. I'd do a sponsored sleep if I thought anybody could be persuaded to contribute to such a thing