Algy's Demise - On Saying The Final Goodbye.
Somewhere here I have blogged some prattle about people's reactions and actions
in dealing with a loved one who is dying, plus what I have witnessed in
hospitals, that did not quite fit in with the Elizabeth Kubler-Ross
model, or maybe they did. In any event I unwittingly did Ms Kubler-Ross a
bit of a disservice.
This entry is going to be about the 'D'
word again so be warned. It's not going to be terribly cheerful as again
it will be stuffed with emotion, some repetition and probably the
hardest thing for me to write with any degree of real honesty.
I
wonder how many of you have faced the loss of a loved one, in the fact
of being confronted with a diagnosis and prognosis that essentially says
"that's it, we can do no more."? How many of you are facing that now
with your own diagnosis? I have experienced the first both as a
professional and on a personal level but will be honest and tell you I
have tried hard not to think too much about the latter.
As said
before in my career, I have been around death quite a bit (hopefully
not as a cause of!) from that horrible moment when a patient and their
loved ones are informed there is nothing more that can be done to the
point when death has occurred. And also again, I have considered taking
care of the dying a privilege as that is the last thing I can do for
that person and hope that at least there has been a semblance of dignity
before the final breath has been drawn. I have been there when a
machine has had to be switched off, when the 'line goes flat' after
thirty minutes or so of desperately trying to resuscitate a patient, or
offset some other life threatening condition, to the peaceful gently
holding a hand of a much loved elder person whose life was drawing to a
close after many years on this planet.
You would think after
all those experiences, I would be like one of those serene sorts who
would encompass a passing with the philosophical air, a comforting word
with a sigh. And yes, I have managed to keep my voice level, attend to
the needs of those who are left behind, being practical, not too overly
sentimental and I hope able to reassure people that a) it's ok to be sad
and to cry and b) those left behind (usually) have the best interests
and love for the deceased which can make letting go a tough deal, no
matter how expected the passing. I have been a source of strength and
comfort, so I have been told, but also have had my fare share of running
in to the sluice room or treatment room to shed a few tears myself.
What chokes me up is when I see others starting to cry or become upset,
especially when the news is sudden for example when a relative has been
informed their loved one has taken ill, to arrive and find that sadly
their loved one has died. The resulting shock is indescribable and for
all the best will in the world, there is never any 'easy' way of
delivering the news and dealing with the aftermath.
But also
there has been a level of maturity that has developed over the years, of
experiences and helping my colleagues deal with the situation,
especially junior staff who are starting out on their career with the
hopes of being healers, but who have to also understand that death is a
part of life, that not everyone is going to make it, or peacefully or
otherwise pass from this life. They will have to learn about dealing
with the dread of phoning someone at 3am to break the bad news, or face
to face in a waiting room somewhere be it to inform someone of the death
of a spouse, relative of an older person or God forbid - and I have
been there to see this - being informed of the death of a child. Also
they have to learn there *is* a time to die, that none of us are built
to last forever and 'life saving' options are not always the most
appropriate options to seek.
But none of that has helped me
deal with this terribly well in my personal life. It is true when you
have professional face, it can shield you to a certain extent as often
there isn't the time to contemplate the full impact of what has happened
as there is more to be done with the living who also need you. That's
not to say there are no feelings, but just the fact there isn't time to
express or contemplate them.
There has been the time, too much
time to contemplate that someone close to me has a limited life span
left, and the feeling of helplessness that I have felt inside while
trying to be the good strong friend and bring comfort to those who are
dying. I am known to be quite honest in conversation as those I have
talked to often have told me things they would not want to anyone else
to hear, and on one occasion, who needed to hear I acknowledged they
knew they were dying.
One of the very first entries to this
blog, I wrote about my friend Veronica who died from a glioblastoma
multiform brain tumour and a conversation we had a couple of months
before she died, but I think that conversation was rather one sided as I
remember now I did a lot of the talking. But I hoped, and still hope it
brought her some comfort.
I had a similar conversation
recently with another very dear friend I have known nearly all my adult
life and had worked with over the years. And now it's hitting me she has
finally gone as I write.
Linda was a fellow nurse, cheeky,
stubborn, brooked no nonsense from senior staff, knew her stuff and had a
wicked sense of humour. Two years ago she survived breast cancer but in
late summer of this year (2013), died from peritoneal cancer which had
spread over the lining of her abdomen. No one really knows but this
could have been a metastasis from the small cancerous cells found in the
lymph nodes of right breast that were successfully treated by surgery,
backup radiotherapy and chemotherapy. No one can always foresee if the
cells have fired off into other areas of the body or not, except through
regular checks.
Lin herself retired from nursing through ill
health as she also had arthritis, but I felt she retired from life
itself a bit as she was a glass half empty sort of person, whereas I
tend to be a half glass full. She spent the remainder of her life
sitting at home with her iPad, tobacco and cups of tea close to her
side. When Lin had the energy, she would visit her favorite pub close by
and enjoyed a lot of Gold Label. At first, her husband tried
everything to get Lin to join in other activities but given her energy
state and stubbornness, Lin decided otherwise.
But of late,
she began to take to her bed, surrounded by her cats whom she loved and
stopped eating and only when she began to suffer crippling pain and
weakness, Lin allowed herself to be admitted to a local hospital, where
she was found to have acities, a condition where fluid builds up in the
abdominal cavity for various reasons, one being the presence of a tumour
somewhere.
Cutting a very long story short, Lin was found to
have multiple cancer nodules across her abdomen and needed up to 3 to 4
litres of fluid drained from her stomach daily as there was no real way
to reduce the cancer, which was the cause of the fluid build up. Lin had
left her treatment too late I guess, not fully realising what was
happening at first but also deep down on realising the extent of her
illness, was not prepared to live through another bout of chemotherapy
and what have you. She was always straight forward and honest with those
around her. Not one to beat about the bush, she wanted to remain in
control of her own destiny.
I visited Lin who was in inpatient
at Treliske not long before leaving for London to start my radiotherapy,
and had a feeling I wouldn't be seeing her again. We chatted about her
cancer and Lin was very definite about getting her affairs in order and
trying to reassure her husband as well but and I think she knew she was
dying at this point. I certainly knew at any rate her condition was too
far advanced for any real effective cure. We have both been experienced
enough with this type of cancer, to realise after a certain point
treatment was usually only palliative.
Mentally, I said goodbye
then, but have only just completed that journey earlier today. I wanted
to see her one more time before leaving for London but she didn't want
to receive any more visitors, so I asked her husband to pass on a
message to Lin that I was thinking of her. After two days in London, I
got the message to say Lin had been admitted to a local hospice for 'end
of life' care as it is known now, and had slipped into unconsciousness.
A day after that, I had texted her husband to ask how Lin was, and he
had text back to say she had just died.
A part of me was
relieved and a bit distant, another part just burst into tears. I am an
emotional person and am not capable of doing the 'stuff upper lift'
thing, and find as I get older, I am not so able to control my emotions
like I used to, not that I was ever very good at that anyway. Lin was
the complete opposite I think, taking charge of her situation by making
sure a will was completed, wanting and arranging to be baptised, setting
her affairs in order and making sure she said goodbye to her husband
who was faced with her dying. She wanted no fuss and wished for
cremation and to be buried with two cats of theirs who had died in
previous years. There is a small pet crematorium and cemetery outside of
Penzance, where animals and their human companions can be buried
together.
I wish I could have returned to Penzance for her
funeral but it would have been a disservice to Lin's memory if I
interrupted my radiotherapy and I often joke that if I did, Lin would
come back to haunt me. So finally after a long while, Dave and I went to
the cemetery at Chyenhall Farm earlier today, had a bit of a domestic
over parking and where I planted (not very well) some crocus bulbs on
one edge of her grave. I didn't feel too emotional then, but am feeling
it now and as always, hate the fact I had to say goodbye and am not very
good at accepting it.
My own death? I have a strong faith, but
yet I am scared of death, probably the method of it and the separation
from those I know and the planet I have inhabited. I have no particular
thoughts about the 'salvation of my soul' as I feel the judgement of
that lies with the deity I call Heavenly Father. To me an afterlife
does exist but that does not make the fact of passing into it any easier
to contemplate. I am afraid to die, I don't want to leave, I don't want
to be without David, I don't want to be alone. If there is no
afterlife, I don't want to become nothing more except a bunch of protons
and electrons - but that is an immortality in itself I guess. I don't
want to cease to exist and I don't want to miss out on all that will
happen afterwards.
I have had to think about these things
though. My parents and David's are at an age where their time will be
done soon and I would like to think the two of us will be able to deal
with that well, but whether in your 50's or five, when a parent dies it
can hurt just as much at any age. When you have to deal with the fact a
loved one, or indeed your own life span is going to be restricted in
some way, that's also lot to deal with. I like to think when my time
comes I will have dignity and will be brave, not to dissolve into tears
at the thought of my passing, but that is something I cannot guarantee.
But I know even more so now - especially after the discovery of Algy
and the fact he or a cousin could still suddenly rise up to put the boot
in - I have to start looking at my mortality and accept that I have a
lot less years ahead than I have had behind me, and deal with the fact
one day I really will have to finally say 'goodbye'.
Wednesday, 27 November 2013
Thursday, 21 November 2013
Algy's Demise - Fangirly Special: Questions from an Actor - Some More Info.
I had planned my trip to Nottingham as soon as the dates came out earlier this year, as it was the first venue to be announced where 'Duck House' would be playng. Had I waited, I could have seen it in either Malvern or Guildford, but heck travelling to a new place is always an adventure! Although I would ask the Park Inn - a Radisson hotel - to be a little more honest about their disabled access i.e. little or none! Anyway, I'm going to leave that for another time,
Nottingham is a big place which seems to be undergoing mass reconstruction at the moment. But the area around the Theatre Royal, is a shopper's paradise with most of the big high street stores close to hand, some in very nicely appointed shopping malls such as Victoria and Corner House.
But it was bloody cold too! Remember in Cornwall 8 deg. C is considered 'ice age' so it's a shock when one is lugging shopping about in temps struggling to hit 4 or 5 deg C! However, one of the *best* eating experiences I have had in a long while, was in a place called 'Hot World Buffet', an 'all you can eat' restuarant with an international cuisine theme. You are with choices of Chinese, Mongolian, Indian, Italian, Japanese, Mexican and good ol' 'Murican' food. You can mix and match, do what ever you like. And the desserts! Wow..let's just say not all were slimming world friendly!! Here's the link :) Red Hot World Buffet Nottingham.
Anyway, I had arranged to meet upwith Ben before the evening performance for a quick 'hello' which I was glad he agreed to. Expecting an actor to hang around after a performance, would be a bit much to ask especially after an evening of dropping one's trousers, chasing duck houses and avoiding senior MP's with a strange predelections towards Camembert cheese, Pandas and Angela Merkels..! It's enough to wear a chap out fo sho'!
I'm not saying another word about the play itself except for only the third time in my life, I had laughed so hard, I had to reach for my Ventolin inhaler during intemission and afterwards! It is a brilliantly funny peice of work. The play starts it's West End run at the Vaudeville Theatre (Strand) from Nov 27th for previews then in earnest from December 10th - March 29th 2014. Details here www.the-duck-house.co.uk Please go an see it, it is brilliant play and all the cast are fantastic!!
Ben was his usual lovely self and greeted me with a big hug and after some pleasantries, he asked me some detailed questions about my radiotherapy and what side effects there were. I did manage to get my head out of 'fangirly' mode as this bit was quite serious. I was not going to play the 'little heroic me' and say that I was fine, as the man asked direct questions. But it was nice that Ben thought I looked so well. Here's a list of what I told him, but also what I forgot to tell him about the more long term effects.
Fractionated Stereotactic Radio Therapy Side Effects.
Short Term Effects -Worsening of current tumour symptoms of fatigue, neuralgic pain (is impacting on Rt. Trigeminal Nerve), balance and spacial perception. Also cognitive problems, short term memory problems, mood swings, premature onset menopause (not worried about that one, 2/3 of the way there already!) Also possible increase in petit mal or other forms of absence seizures but so far, that hasn't happened. Hair loss around target sites - didn't happen to me. I have thin but tough hair! ;-)
Long Term Effects - The reason why I had FSR rather than the shorter more intense 'Gamma Knife radiosurgery' is because of where Algy is situated. There were concerns about a more intense therapy in that region could irradiate the brain stem just below where Algy is nesting against the Pons. So smaller, more wide spread doses hopefully lessens the impact of radiation in that area of the brain.
And also - possible damage to pituitary gland, I was told I should be referred to an endocrinologist and checked yearly as the pituitary gland was in the path of one of the beams used to target Algy. Premature aging of the brain, a 2% chance of developing a malignant brain tumour over 10 years and so on. There is also an increased risk of stroke but then lifestyle changes will hopefully offset that.
The above is of course, the worse case scenario and given I am already neary 53 and the above could occur anytime over a 10 year period, I'm in a time of life where I could develop these symptoms anyway, so considered it worth the risk for radiotherapy now rather in 2-3 years time. I don't see the logic in waiting for Algy to get any bigger or waiting for more damage to occur before treatment.
 |
| http://psychapprentice.weebly.com/4/post/2013/02/pons.html |
I will be having yearly MRI scans to check on Algy's progess as it can take up to 5 - 10 years to check if Algy's growth has been inhibited or stopped completely. There is a 40% chance Algy may shrink over that time but no one can say by how much or what damage may be permanent despite Algy's shrinkage. So really that's all that can be done for now. The intent of treatment is to arrest Algy's growth, so anything else is a plus, an extra. Surgery would not be considered due to Algy having tucked himself neatly against the Pons with the cranial nerveswrapped around him, and also being so close to the optic nerves too. So *fingers crossed* Algy will be a good boy, stay put and not make me blind, paralysed or anything else!
So there you go! It does sound a lot worse than it is, and of course, no-one can predict the future and how things might turn out. But one thing I *can* predict is that when I go up to see 'The Duck House' in March next year, I will be laughing as hard and as loud as the rest of the audience! If 'Duck House *doesn't* get an Olivier Award, there'll be a protest!
Break a leg Ben! :D
 |
| Ben Miller with some mad woman outisde the Theatre Royal one cold November evening! |
Sunday, 10 November 2013
Algy's Demise - Thoughts On the Hammer Out Awareness Day in Plymouth 9th Nov 2013
This is my entry to Facebook this evening. Edited for here.
Had a good day today at the Hammer Out Awareness day in the Mustard Tree Centre at Derriford, where support for cancer patients is given. Sadly though and this must be addressed by all medical and ancillary parties, it has come across very loudly that those of us with low grade tumours that are classed as 'benign' or below a stage 3 are often not given support because our tumours are not aggressive enough. There were so many there today have suffered badly with their 'benign' tumours; yet appeared to be dumped after treatment is given and had to really struggle to get support.
Had a good day today at the Hammer Out Awareness day in the Mustard Tree Centre at Derriford, where support for cancer patients is given. Sadly though and this must be addressed by all medical and ancillary parties, it has come across very loudly that those of us with low grade tumours that are classed as 'benign' or below a stage 3 are often not given support because our tumours are not aggressive enough. There were so many there today have suffered badly with their 'benign' tumours; yet appeared to be dumped after treatment is given and had to really struggle to get support.
 |
| Me, Julie Liddle, Robyn Teague, Katrina Pearce, Ann Coles at the meeting. |
Again for me it is the sadness that those of us with low grade tumours (I
*hate* the word 'benign' and refuse to use it now) are not always getting the
support needed for coping with diagnosis, impact on life, aftercare etc.
For those with high grade
tumours, I am glad to say the service in my area is usually impeccable as it
should be. But low grades have the same issues, treatments etc and can
still die from theirs. Although treated as oncology patients, we often
don't count as 'cancer' patients as that is technically a term to
describe malignancy.
In my opinion and it has been said, whatever grade you are, the words 'Brain Tumour' changes you no matter what level of seriousness and I think that term alone should be unified and at the same level in terms of availability and in the quality of support to *all* brain tumour sufferers.
A small but prime example of this is that there is a journal called 'the grey book' that is similar to the one brainstrust issues, for brain tumour patients at the Mustard Tree Centre, issued by MacMillan, but only those who are a stage 3 and above. Yet we can all have the same issues etc and that has hit home the unfair divisions between low and high grade patients.
In my opinion and it has been said, whatever grade you are, the words 'Brain Tumour' changes you no matter what level of seriousness and I think that term alone should be unified and at the same level in terms of availability and in the quality of support to *all* brain tumour sufferers.
A small but prime example of this is that there is a journal called 'the grey book' that is similar to the one brainstrust issues, for brain tumour patients at the Mustard Tree Centre, issued by MacMillan, but only those who are a stage 3 and above. Yet we can all have the same issues etc and that has hit home the unfair divisions between low and high grade patients.
I think this should be discussed in all groups and flagged up by the larger brain tumour charities as there are dependencies (in my neck of the woods certainly) with the quality of aftercare. I mean it's hard enough at the best of times to get a diagnosis, never mind as to what stage and coping with the impact on one's life.
Also just read on FB that there is a medical professional who refer to low grade brain tumours as 'malignant by location' which I think is a better term and prescription.
Opinions welcomed on this one.
Also just read on FB that there is a medical professional who refer to low grade brain tumours as 'malignant by location' which I think is a better term and prescription.
Opinions welcomed on this one.
Saturday, 19 October 2013
Algy's Demise - Mental Health and Brain Tumours; My Confession.
I have had a series of melt downs of late, which is to be expected considering the underlying stress that is always present no matter how 'benign' Algy is in terms of size and effect. But I have noticed the things I usually enjoy are now becoming sources of great anxiety.
Having a look back through this blog, most posts are about my feelings and emotions than anything else. I find it therapeutic to write so yes, it's a given but also I have noticed the rise in the frequency and severity of meltdowns which can be at risk of getting out of control if not dealt with.
I hate to say this, but social media - or more correctly, Twitter and Facebook is my conduit to the world but that seems to be changing. It's not the medium itself but how I have used it plus my expectations of it, becoming dependant not just for company and news, but also a place of bolstering my self esteem .
It has become the place where I lay my 'back-to-adolescent' insecurities, anxieties, need to be noticed, to be reassured, to be validated as a person. In short I have become addicted and worry one day I will go too far in terms of my neediness and will lose those I follow there and have become friendly with..
On reflection, I seem to be more prone to mood swings which I wonder is bordering on obsessive behaviour , plus what also isn't helping is the menopause which I am starting.
So am I just going nuts? Being childish? Or maybe there's more to this than my time of life and maturity issues?
Most emotional changes are natural responses to being placed in a situation that by it's very nature is a great cause of stress, especially with having to deal with the changes and effects placed on ones life style and responsibility.
Neurological diseases and disorders can and do have mental health illness as a symptom, not in the least brain tumours as some will impact on areas of the brain where emotions, thought processes, memory function etc originate. Add to that effects on the cells where the nerves originate impacting on movement and physical function, all can add distress.
Most Obvious are:
Fear, anxiety, anger, sadness/grief, insecurity, denial of the stress, losing perspective, increased tendency to arguments, width drawl and increased isolation, obsessions, obsessive compulsive disorder, possible loss of reality, inability to cope, depressions, changes to personality, increased mood swings/highs/lows
Also
Memory loss, confusion, exacerbation of current mental illness such as psychosis, dementia, etc. Onset of new mental illness such as anxiety and neurosis, depression, cognitive changes. Depressive disorders. Personality disorders as well as the above which will have an impact on physical function.
The above list is by no means exhaustive. Also it should not be taken that you might have any or all of these, but it does have to be recognised. Often the onset can be gradual or may have nothing to do with the brain tumour, that it can be a problem arising from other illnessess.
My own particular situation is one maybe borne from dealing with changes to my personal life and I have to admit my underlying fear for the future and becoming 'persona non gratis'. As said before I have that wonderful thing called 'The Menopause' which as much as some would hail as being a positive milestone for women, has been a prized pain in the ass for me, not helping my moods what so ever! But I guess at least having an awareness of these means at least I am not going certifiably crazy - yet!
I do have a long way to go in terms of awareness, self honesty and dealing with the future. There is so much I want to do, and I genuinely want to reach out to others and make a contribution. But I also have to recognise my limits and recognise when my reactions are becoming unhealthy and unrealistic. It's a sobering thought, something we all have to be aware off whether fit or not, and also accept that others around us may not always be in a position to help or even understand.
Reaching is out is important and quite often, whether we like it or not, others are more likely to see the changes before we do and that is difficult as it can lead to conflict or abandonment from either side. Some really cannot deal with the issues and some may not want to. Much heartache can usually and does result which is why it *is* important to consider mental health needs along side the physical ones when discussing care and symotoms with your doctor.
Here's a quote from a web page which sums up the issues well.
"Brain tumors can cause seizures, mental changes, and mood, personality, and emotional changes. Tumors may also impair muscle function, hearing, vision, speech, and other neurologic activities. Such effects can be very difficult for both patients and caregivers."
From The Avera Website
Also there's a handy info sheet from an Australia you can find at Beyond Blue Site (Ausralia) This page will open up as a 'pdf document' and you will need a reader for this. A free one can be found here Adobe Reader Website
Hopefully my particular issues will settle in time as I recover from radiotherapy. But an inflamed Algy has a lot of impact and certainly this needs monitoring but not something to be afraid of so long as I am sensible, see it for what it is and seek help when necessary.
Having a look back through this blog, most posts are about my feelings and emotions than anything else. I find it therapeutic to write so yes, it's a given but also I have noticed the rise in the frequency and severity of meltdowns which can be at risk of getting out of control if not dealt with.
I hate to say this, but social media - or more correctly, Twitter and Facebook is my conduit to the world but that seems to be changing. It's not the medium itself but how I have used it plus my expectations of it, becoming dependant not just for company and news, but also a place of bolstering my self esteem .
It has become the place where I lay my 'back-to-adolescent' insecurities, anxieties, need to be noticed, to be reassured, to be validated as a person. In short I have become addicted and worry one day I will go too far in terms of my neediness and will lose those I follow there and have become friendly with..
On reflection, I seem to be more prone to mood swings which I wonder is bordering on obsessive behaviour , plus what also isn't helping is the menopause which I am starting.
So am I just going nuts? Being childish? Or maybe there's more to this than my time of life and maturity issues?
Most emotional changes are natural responses to being placed in a situation that by it's very nature is a great cause of stress, especially with having to deal with the changes and effects placed on ones life style and responsibility.
Neurological diseases and disorders can and do have mental health illness as a symptom, not in the least brain tumours as some will impact on areas of the brain where emotions, thought processes, memory function etc originate. Add to that effects on the cells where the nerves originate impacting on movement and physical function, all can add distress.
Most Obvious are:
Fear, anxiety, anger, sadness/grief, insecurity, denial of the stress, losing perspective, increased tendency to arguments, width drawl and increased isolation, obsessions, obsessive compulsive disorder, possible loss of reality, inability to cope, depressions, changes to personality, increased mood swings/highs/lows
Also
Memory loss, confusion, exacerbation of current mental illness such as psychosis, dementia, etc. Onset of new mental illness such as anxiety and neurosis, depression, cognitive changes. Depressive disorders. Personality disorders as well as the above which will have an impact on physical function.
The above list is by no means exhaustive. Also it should not be taken that you might have any or all of these, but it does have to be recognised. Often the onset can be gradual or may have nothing to do with the brain tumour, that it can be a problem arising from other illnessess.
My own particular situation is one maybe borne from dealing with changes to my personal life and I have to admit my underlying fear for the future and becoming 'persona non gratis'. As said before I have that wonderful thing called 'The Menopause' which as much as some would hail as being a positive milestone for women, has been a prized pain in the ass for me, not helping my moods what so ever! But I guess at least having an awareness of these means at least I am not going certifiably crazy - yet!
I do have a long way to go in terms of awareness, self honesty and dealing with the future. There is so much I want to do, and I genuinely want to reach out to others and make a contribution. But I also have to recognise my limits and recognise when my reactions are becoming unhealthy and unrealistic. It's a sobering thought, something we all have to be aware off whether fit or not, and also accept that others around us may not always be in a position to help or even understand.
Reaching is out is important and quite often, whether we like it or not, others are more likely to see the changes before we do and that is difficult as it can lead to conflict or abandonment from either side. Some really cannot deal with the issues and some may not want to. Much heartache can usually and does result which is why it *is* important to consider mental health needs along side the physical ones when discussing care and symotoms with your doctor.
Here's a quote from a web page which sums up the issues well.
"Brain tumors can cause seizures, mental changes, and mood, personality, and emotional changes. Tumors may also impair muscle function, hearing, vision, speech, and other neurologic activities. Such effects can be very difficult for both patients and caregivers."
From The Avera Website
Also there's a handy info sheet from an Australia you can find at Beyond Blue Site (Ausralia) This page will open up as a 'pdf document' and you will need a reader for this. A free one can be found here Adobe Reader Website
Hopefully my particular issues will settle in time as I recover from radiotherapy. But an inflamed Algy has a lot of impact and certainly this needs monitoring but not something to be afraid of so long as I am sensible, see it for what it is and seek help when necessary.
Monday, 14 October 2013
Algy's Demise - On Charity and Volcanic explosions
Ok, I'm having another 'moment' or more precisely a moment that is turning in to a long moment. Sleep has been rare of late, at first due to facial pain but now because my sleep pattern has well and truly gone up the spout! And when I get overtired, explosions occur in volume similar to Mount St Helen's, Vesuvius and Krakatoa!
Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.
The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that is what it can do to your financial security.
Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.
And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit? What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.
And the same goes for Disability Living Allowance or personal independance paymentents as it is called now. Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.
Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding. But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.
I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.
So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of 'don't worry it if you can't, I understand' sent me over the edge.
Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.
Now don't assume I cannot or do not want to support charities. I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time. Or at least not to openly to ask it of an individual on a social media website.
As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever. But if you want me to donate cash right about now? Please don't ask as a refusal often offends.
Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.
The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that is what it can do to your financial security.
Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.
 |
| Don't upset me. You really *don't* want to upset me..... |
And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit? What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.
And the same goes for Disability Living Allowance or personal independance paymentents as it is called now. Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.
Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding. But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.
I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.
So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of 'don't worry it if you can't, I understand' sent me over the edge.
Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.
Now don't assume I cannot or do not want to support charities. I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time. Or at least not to openly to ask it of an individual on a social media website.
As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever. But if you want me to donate cash right about now? Please don't ask as a refusal often offends.
Friday, 27 September 2013
Algy's Demise - I Got Stoned and I Missed It...
It's been a few days since Dave and I returned to Penzance. And Boy! They were *not* joking about the side effects, which seemed to get worse a day after radiotherapy was completed.
We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!
As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'. That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.
I digress. Now, radiotherapy side effects. I was warned that fatigue and possible facial pain would occur as Algy is swelling a bit as the protons do their stuff through him and some surrounding areas. But almost immediately after stopping Dexamethasone - a steroid - the vertigo is back with a vengeance! Also I still have a terrible craving for sweet food yet can't taste it well, my concentration has gone to pot and I feel spaced out all the time but at least the seizures haven't increased apart from the Islington incident. I find now I dare not leave the house on my own as I am definitely more wobbly on my feet, so need Dave or someone with me so I can grab their arm. That's always been a problem in narrow crowded areas but for a while, sadly, it will be a little worse.
The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)
Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.
I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.
With the above, the secret is I guess, is to get to know how you will be affected and be honest about it. Right now I'm ok while typing this but tomorrow it may be all doom and gloom. There will be swings and roundabouts but because I have been informed about this and have an idea what to expect, I think I will be able to manage this better and know when to seek help if it all gets a bit too much. I am also letting those around me know what could happen so they are prepared too as I already had a flare up over something a few weeks back which resulted in my ripping some family members a new one on Facebook! So now they know now for instance, to keep me in the picture about anything major going on. It was a misunderstanding for sure but also very poor communication on their part too which only got sorted after my Facebook outburst because someone saw my rants and realised trouble was afoot!
I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at madamcod@yahoo.co.uk. or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.
Right, more drugs needed! Laters!
 |
| Dave at the Crown next to the Royal Marsden Hospital |
We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!
As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'. That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.
 |
| Where I collapsed in Islington |
The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)
Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.
I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.
 |
| Dave at the British Museum |
I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at madamcod@yahoo.co.uk. or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.
Right, more drugs needed! Laters!
Monday, 23 September 2013
Algy's Demise - Goin' Home...
Now before you all fall about laughing, yes I am a fan of The Osmond
Brothers and a song of theirs has been ringing in my head since I woke
up with morning. The chorus especially!
"Goin' home, goin' home, goin' home,
I gotta make it, gonna make it all right.
Goin' home, goin' home, goin' home
If it takes the rest of my life........"
The lyrics sum up the journey so far very well. And it is only so far too as Algy and I will always be together. He might be fried but how effective that will be, no one will know for years yet and he can never be removed unless he decides to ignore six weeks of protons being fired through him, or take in a cousin (2% chance) in the next little while and try to occupy more space. If that happens, at the very least it will not be pleasant because the little bugger is quite close to the brain stem.
We leave for Penzance tonight at 7pm but will spend the day quietly tidying up, having a last look about the Goldborne Road area where I have been residing these last few weeks, and I'll try not to think too much about the near wiping out of my credit card and overdraft that has occurred. It has been a blast here in London and treatment aside, I have had a great time with being lucky not to be so ill I couldn't get out and about. However, I wonder if the side effects had been worse whether it would have been as much fun?
So this is going to be one of those *huge* long 'Hollywood - overrun - at - the - Oscars - thank you' posts, because there are *so* many to thank, in groups, indiviuals and I *know* I'm gonna forget someone but please if you're not on the list, don't fret. I am *so* grateful to you for making what could have been a dreadful time actually go very well!
*Loud intro and drum roll*!
My grateful thanks to (in no particular order) -
My Darling Dave, My baby bro Trevor, Lowri, Bethan, Nathan, John, Tina, Margaret, Duncan, Anne, Duncan Jr, Peter. Mum & Dad.Anthony and Tricia, Gordon and Gladys
Margie and Robert Hall
Veronica Taylor and The New Freedom Project
Debbie Carter @DebbieCarter14
Sarah Tarmey @tarmeygal1
Claire Siliciano @Science_Fan
Gilly Henwood @Gillyh1
Margo Milne @MargoJMilne
Misa Buckley @MisaBuckely
Claire Bullimore @BrainTumourAunty
Eileen Bullimore @pillionqueeen
Alana Herd @MyMillionToOne www.mymilliontoone.com
Ben Miller @ActualBenMiller
Philip Ardagh @PhilipArdagh
@DeathinParadise
Gary Carr @iamgarycarr
Elizabeth Bourgine @lizbourgine
Danny John-Jules @DannyJohnJules
Beth Allan @BethAllen
Cappie @Cappiehead
Jo DeLapo @agitator76
Nathalie Martin @NanyLouloute
Sabine @Gracie_22
Steffi @St3ffi_K
Hils @HilsP
Manuela @manuzanni
Jodie @sunshine_6972
@Whovian__
Kim Agaren @kikiagar
Michaela C @FiveFrogsBlog
Yasmina Sihel @YasminaSihel
Kaz Poole
Cafe Roma
The Crown - Marsden.
Jullie Liddle
Katrina Peirce
Chris and Jenny Smirthwaite
Pearl Ashton @pearlashton
Ann Coles at Hammer Out
Shane and Timothy Spall @pastafa
@HammerOutNews
All at The Royal Marsden, Fulham Road inc Katheryn and all on Lederman.
Mr James Patterson FRSC FRCN
Glad Baldrey RN BSc CNS Neuro-Oncology
Dr Jan Power, Dr Hugh Marshall Rosmellyn Surgery
Shirley Harris, Matron, West Cornwall Hospital
All at West Cornwall Hospital, Penzance
All at Derriford Hospital, Plymouth
All at Hammer Out Brain Tumours
All at Brainstrust
All at Meningioma UK
All at The Brain Tumour Charity
Shaun Skinner
Nick Phillips
Simon Reed @aramblingidiot
Mike Sagar-Fenton
Julian Greenwood-Penny
All at The Cornishman @The|Cornishman
Marilyn King
Jan O Malley
@TeamXander
@RichardOsmanFan
Cameron Yarde Jr. @CameronYardeJr
Alexander Armstrong @XanderArmdstrong
Alison and Dave Trace @aligubbs
Pamela Sutherland @Ltd_To_Two
Poor Old Bird @pooroldbird
S A Meade @kestrelrising
Jon Parker-Saville @FutureGuy75541
Lindsay Pickering and Peter Routley
Andre Haines and Gregory Watters
Rev. Julyan Drew @pronterjools
Chris Steadman @ChrisDSteadman
Susie Tait and the Monday Slimming World group.
Elizabeth Reknowden
Heather Anne Stewart-Gillis
Marla Kaye
Geraint Wyn Davies and Claire Lautier
Bea Quindlen
Susan Doss
Astrid Tanabet
Mary Strowger
Marg Yamanaka
Lee Kennedy
Chris Chell-Czerwinski
Maribel Veal
Gill and David Dodson
Jan Crocker
Roseanna and John Bray
Elizabeth and Eric Bray
The *entire* congregation of The Church of Jesus Christ of Latter-day Saints in Helston, Cornwall for all the cards, pressies, choccy *and* for feeding my C of E hubby Dave!
Wayne Brown @Eroica3
Christina Logan @LoganTinaLogan
Emma @Realsinginmouse
Sophie Hay @pompei79
Lesley Roberts
Marion Pitman
Kerry Endecotte
Dale Who
Sarah Jane
Kathleen Ginieres
Dawn Fidler and Josh @JourneyJoshuas
Stephen Rodda
Denise Raphael Hopkins
Sarah Clarke @AcSarahAC
Everyone involved at @ArmadaCon
And of course, the whole bleddy population of Penzance!
My time with Algy is far from over, as said before but one thing you can be sure of though. It doesn't matter if you can only send a tweet, wish, word, thought, etc. IT COUNTS! IT HELPS! *ALL* OF IT!! Never let anyone try and tell you otherwise. The fact someone cares enough to make even the smallest of gestures can mean so much. I have been and continue to be so very blessed and lucky during all of this, to be around those who have given me so much support and continue to do so, to encourage, bouy up and give a good kick in the pants when needed. But I am very heartbroken to say that there are those out there who have no one to lean on, who have been all but abandoned by their families and friends who cannot deal with the 'C' word, or the fact the person affeced cannot function as they used to. That happens a lot and it is shameful to say the least.
For those out in the media, one word, one RT on twitter makes all the difference as well because people *will* and *do* take notice. And if that's just one other person who maybe curious to read further, or who might be finding themselves starting this journey or who are affected by it an any way who can be reached, then it's worth it.
So thank you to everyone from the bottom of my heart. The journey continues and so must I.
Love,
Hev XXXX
"Goin' home, goin' home, goin' home,
I gotta make it, gonna make it all right.
Goin' home, goin' home, goin' home
If it takes the rest of my life........"
The lyrics sum up the journey so far very well. And it is only so far too as Algy and I will always be together. He might be fried but how effective that will be, no one will know for years yet and he can never be removed unless he decides to ignore six weeks of protons being fired through him, or take in a cousin (2% chance) in the next little while and try to occupy more space. If that happens, at the very least it will not be pleasant because the little bugger is quite close to the brain stem.
We leave for Penzance tonight at 7pm but will spend the day quietly tidying up, having a last look about the Goldborne Road area where I have been residing these last few weeks, and I'll try not to think too much about the near wiping out of my credit card and overdraft that has occurred. It has been a blast here in London and treatment aside, I have had a great time with being lucky not to be so ill I couldn't get out and about. However, I wonder if the side effects had been worse whether it would have been as much fun?
So this is going to be one of those *huge* long 'Hollywood - overrun - at - the - Oscars - thank you' posts, because there are *so* many to thank, in groups, indiviuals and I *know* I'm gonna forget someone but please if you're not on the list, don't fret. I am *so* grateful to you for making what could have been a dreadful time actually go very well!
*Loud intro and drum roll*!
My grateful thanks to (in no particular order) -
My Darling Dave, My baby bro Trevor, Lowri, Bethan, Nathan, John, Tina, Margaret, Duncan, Anne, Duncan Jr, Peter. Mum & Dad.Anthony and Tricia, Gordon and Gladys
Margie and Robert Hall
Veronica Taylor and The New Freedom Project
Debbie Carter @DebbieCarter14
Sarah Tarmey @tarmeygal1
Claire Siliciano @Science_Fan
Gilly Henwood @Gillyh1
Margo Milne @MargoJMilne
Misa Buckley @MisaBuckely
Claire Bullimore @BrainTumourAunty
Eileen Bullimore @pillionqueeen
Alana Herd @MyMillionToOne www.mymilliontoone.com
Ben Miller @ActualBenMiller
Philip Ardagh @PhilipArdagh
@DeathinParadise
Gary Carr @iamgarycarr
Elizabeth Bourgine @lizbourgine
Danny John-Jules @DannyJohnJules
Beth Allan @BethAllen
Cappie @Cappiehead
Jo DeLapo @agitator76
Nathalie Martin @NanyLouloute
Sabine @Gracie_22
Steffi @St3ffi_K
Hils @HilsP
Manuela @manuzanni
Jodie @sunshine_6972
@Whovian__
Kim Agaren @kikiagar
Michaela C @FiveFrogsBlog
Yasmina Sihel @YasminaSihel
Kaz Poole
Cafe Roma
The Crown - Marsden.
Jullie Liddle
Katrina Peirce
Chris and Jenny Smirthwaite
Pearl Ashton @pearlashton
Ann Coles at Hammer Out
Shane and Timothy Spall @pastafa
@HammerOutNews
All at The Royal Marsden, Fulham Road inc Katheryn and all on Lederman.
Mr James Patterson FRSC FRCN
Glad Baldrey RN BSc CNS Neuro-Oncology
Dr Jan Power, Dr Hugh Marshall Rosmellyn Surgery
Shirley Harris, Matron, West Cornwall Hospital
All at West Cornwall Hospital, Penzance
All at Derriford Hospital, Plymouth
All at Hammer Out Brain Tumours
All at Brainstrust
All at Meningioma UK
All at The Brain Tumour Charity
Shaun Skinner
Nick Phillips
Simon Reed @aramblingidiot
Mike Sagar-Fenton
Julian Greenwood-Penny
All at The Cornishman @The|Cornishman
Marilyn King
Jan O Malley
@TeamXander
@RichardOsmanFan
Cameron Yarde Jr. @CameronYardeJr
Alexander Armstrong @XanderArmdstrong
Alison and Dave Trace @aligubbs
Pamela Sutherland @Ltd_To_Two
Poor Old Bird @pooroldbird
S A Meade @kestrelrising
Jon Parker-Saville @FutureGuy75541
Lindsay Pickering and Peter Routley
Andre Haines and Gregory Watters
Rev. Julyan Drew @pronterjools
Chris Steadman @ChrisDSteadman
Susie Tait and the Monday Slimming World group.
Elizabeth Reknowden
Heather Anne Stewart-Gillis
Marla Kaye
Geraint Wyn Davies and Claire Lautier
Bea Quindlen
Susan Doss
Astrid Tanabet
Mary Strowger
Marg Yamanaka
Lee Kennedy
Chris Chell-Czerwinski
Maribel Veal
Gill and David Dodson
Jan Crocker
Roseanna and John Bray
Elizabeth and Eric Bray
The *entire* congregation of The Church of Jesus Christ of Latter-day Saints in Helston, Cornwall for all the cards, pressies, choccy *and* for feeding my C of E hubby Dave!
Wayne Brown @Eroica3
Christina Logan @LoganTinaLogan
Emma @Realsinginmouse
Sophie Hay @pompei79
Lesley Roberts
Marion Pitman
Kerry Endecotte
Dale Who
Sarah Jane
Kathleen Ginieres
Dawn Fidler and Josh @JourneyJoshuas
Stephen Rodda
Denise Raphael Hopkins
Sarah Clarke @AcSarahAC
Everyone involved at @ArmadaCon
And of course, the whole bleddy population of Penzance!
My time with Algy is far from over, as said before but one thing you can be sure of though. It doesn't matter if you can only send a tweet, wish, word, thought, etc. IT COUNTS! IT HELPS! *ALL* OF IT!! Never let anyone try and tell you otherwise. The fact someone cares enough to make even the smallest of gestures can mean so much. I have been and continue to be so very blessed and lucky during all of this, to be around those who have given me so much support and continue to do so, to encourage, bouy up and give a good kick in the pants when needed. But I am very heartbroken to say that there are those out there who have no one to lean on, who have been all but abandoned by their families and friends who cannot deal with the 'C' word, or the fact the person affeced cannot function as they used to. That happens a lot and it is shameful to say the least.
For those out in the media, one word, one RT on twitter makes all the difference as well because people *will* and *do* take notice. And if that's just one other person who maybe curious to read further, or who might be finding themselves starting this journey or who are affected by it an any way who can be reached, then it's worth it.
So thank you to everyone from the bottom of my heart. The journey continues and so must I.
Love,
Hev XXXX
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