Blog Sunday
24th March 2013- Thursday 28th March 2013
Neil’s
Sunday - things come to a head. Lots of anger. I don’t
intend on going into detail and I suppose it is to be expected.
Needless to say, with my condition,& the demands of
life that we are under, stress levels emotions sometimes run high and it can be
difficult to express feelings without defaulting to defensive mechanisms
(displacing ,projecting, emotional reasoning etc) along with blame.
Hopefully the boys will come along with us to see the
oncologist/Macmillan nurse/tumour support group /talk with friends and family
whilst continuing our normal family stuff.
On a positive note, these outpourings of emotion can
bring issues to the fore so that we can respond to them. Hopefully the boys
& I have a greater appreciation of Anne’s Burden (working, running home, driving,
trying to sort out practical matters (Car, Will, bills, insurance etc, and the
need for us all to be proactive in our support rather than expect Anne to ask
Contemplating the future????
Monday 25th March 2013
Town with Rory to sort out various tasks. He needs an
adult with him to get a X=box game fixed and a debit card at the bank. I need
to collect Anne’s bike from the repairs.
Walking into town has to be good exercise and I am convinced helps with
the water retention. Plus I get to spend precious time with Rory.
Tuesday 26th March 2013
Elsa kindly offers to take us to Oncology outpatients;
luxury, being dropped off outside the entrance saves considerable hassle.
Driving, parking .traipsing then pick up .Many thanks.
 |
| Foreboding |
Rory & Felix us join us .We meet the registrar (JC) for
the first time along with a nursing assistant (Tanya?) Report back on symptoms,
Dr Questions whether the somnolence may be some kind of seizure?
 |
| scary |
Treatment
options explored
Surgery: surgery would be good.
in my opinion Remove the problem and your chances seem to improve significantly
I ask again about surgery and in particular “gamma knife
surgery” which a number of you have made me aware of as a treatment option that
has been used for brain tumour with some success. This type of procedure is not
currently available locally, Moreover because of the position, size, type of
the Astrocytic, Multifocal- glioblastoma,
grade four surgery is & has been
from the outset contra indicated as the hazards are to great..[That doesn't mean to say that some procedure may become available in my life time]
Chemotherapy: comes with side
effects which may be debilitating and extend life by? Balancing quality of life
and extending
a) Temozolomide (Temodar, Temodar) has been trialed for
Multifocal Glioblastoma; I had a brief look at the available results on the
internet .Not that impressive. Oncologist recommends I use the Macmillan site
for the most helpful information searching
http://www.macmillan.org.uk/
b) PCV which
stands for Procarbazine. CCNU (iomustine); Vincristin’
c) Steroids I continue on the steroids which have multiple side effects as
previously noted ,however they keep the intracranial swelling / headaches at
bay so that’s a massive benefit. A price worth paying
Further
Radiotherapy:
Not a cure in itself in my situation it was only ever
going to be an attempt to stem the growth of the aggressive type of tumour that
I have. Having being blasted by the x6 doses..The remnants/debris of blasted
cells are given time to settle ( my understanding is that initially there is a pseudo impression of
growth as a consequence hence the time frame needed to settle reassess).
Plan: Allow things to settle, carry on with current
medications then scan (MRI) in six weeks : review with oncologist in eight
weeks.
Dr is not convinced that I might be able to manage a game
of five a side football .I reckon if I could get my stamina up there is always
a possibility Watch this space
Continue with support groups
Engage with Macmillan
Continue self help/routine etc
My father in law has to be admitted to hospital for blood
transfusion and further investigations . Our best wishes to Mary & Jim and
the whole family at this challenging time. No doubt the extended family
/friends will rally round .Anne will be constrained
Wednesday 27th March 2013
Train to Bury to spend the day in various work
activities. I managed to get the time of the departing train wrong: not for the
first time and took the wrong return train ticket. However Anne spoke to the
station crew at Cambridge who were helpful
Many thanks to Jan for picking me up from the station
saving the walk up Parkway exhausting..Good clinical supervision session with
JH JC
 |
| Jill, Jan supportive |
Then over to the BCMHT where I managed to see the
indefatigable (JT) and my amazing colleagues/friends who have been a massive
part of my life for the last decade I cannot say enough positive things about
this team and it saddens me that we are effectively being dismantled as part of
a Trust wide re design
.JPG) |
| Bcmht great bunch |
.A state of uncertainly /limbo currently prevails which
is not good. Gave myself plenty of time to
get the train times correct. Thanks to
JL for the rhubarb.
Evening : Pub .Great to see the nephews Daniel &
Stephen Edmond's who joined us for the evening and were able to share there life
experiences, views about work, lifestyle etc with Felix. It sounded very sensible
let’s hope he was listening.
Another newcomer ‘Jack M’ with Dad John. Great to see Jack & Felix exchanging news. Rob
goes for the burger Stilton option and kingly gives Paul R a lift home. Ray T a
star ensuring the conversation and beer flows .Felix takes this to an
unexpected level.
.JPG) |
| Felix,Daniel ,Stephen,Raymond |
.JPG) |
| Sensible advice from Daniel |
.JPG) |
| Daniel,Stephen,Jack M |
 |
| Robs burger & Stilton |
 |
| Gathering |
Thursday
28th March 2013
Man comes to fit electronic charge point .
.JPG)
.JPG)
I go and get my hair cut what’s left of it reduced
charge?
 |
| Haircut /Hairloss |
.JPG) |
| moon face,bison neck,hair loss |
Felix's twentieth birthday and he’s up before ten! Pleased
with his presents ,spends lunch with his longstanding buddy DM. Wants curry for
dinner then out with his friends. Anne off to Addenbrookes to support Mary
& Jim
NH 28/3/13
This bloody cancer thing is a real pain isn't it? Chris' neuropathy continues. She's starting to feel a bit numb around her mouth now but maybe that was the curry I forced on her this evening.
ReplyDeleteWe haven't had the meltdown yet but I get quite close to it when I'm faffing around with the washing....and people keep asking where's my(insert garment of your own choice).
Hope Anne can cope with everything that's going on...Chris wants to give her a call, when's a good time?
Fortunately ,I have little pain; Aching joints can wake me in the early hours.Manageable.Sorry to hear that Chris's symptoms include neuropathy. Our Meltdown was on Mothers day,with lots of anger& posturing. This week we give up the lease car and will be using a local car sharing scheme until Anne decides what she wants to do about transport.The boys have stepped up with the help and have a cook night each and will get on with the dishwasher etc without to much arguing.Anne does not mind when Chris calls,whatever the time /day .We have an answering machine (which takes name/return number) which fields most calls each day(this varies 1-10): we have the option of picking up if we really need/want to speak as the call comes in (this depends on whether we are in the middle of something or about to go somewhere Etc.Best Regards
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