Saturday, 24 January 2015

A Little Rant from Facebook - No, It's Not Just My Age!

On Facebook, one comes across pictures with pearls of wisdom on them. One made me think on the difficulty of putting across the problems faced by brain tumour sufferers, and those with other illnesses where it's not apparent the person is ill or even looks ill. I had this problem recently talking about the fact a side affect of treatment and for me, an acceptable risk in the hope of stopping Algy from growing.

My main problem is the fact my memory has been affected and the constant forgetting where I've put something seconds after leaving it and such not, has become a huge frustration.

It's not obvious as when I go out and get chatting, things are ok but often I find it difficult to remember names etc and know this isn't down to my age as the deterioration has occurred after my radiotherapy. It's not massively bad but the brain does age faster after radiotherapy and there is a small risk of dementia, since I have a family member who has Alzheimer's, the fear of getting this is always in the back of my mind.

So what you ask, everyone has that. Well, please read the following and the meme that prompted this I've uploaded at the end. This is not so much about my problem but an example of what so many try to get others to understand, and find that very few really want to.

Comments welcome as always either here or at twitter where I am @braintumourlady.

***************************************************

Facebook entry - 23rd January 2015.

"This reflects what most most people with a brain tumour would want to say about theirs, so I'm going to say it about mine. I have had a *very* hard time putting this across!! I *hate* it when people tell me 'it's only your age' etc. Well, here's some blunt info in caps.

IN REGARDS TO MY SHORT TERM MEMORY AND COGNITION.

NO IT'S NOT 'JUST MY AGE AND THAT EVERYONE HAS IT'!!

I HAVE A FRAKKIN' LUMP IN MY HEAD THAT SHOULD NOT BE THERE AND IS STILL DAMAGING THE BRAIN TISSUE AROUND IT!! I HAVE HAD RADIOTHERAPY TO STOP THE FRELLIN' THING FROM GETTING BIGGER AND A SIDE EFFECT OF THAT *IS* DAMAGE TO COGNITION AND MEMORY. I GET TIRED, I CAN'T ALWAYS THINK OR REASON, AND CAN BE EMOTIONALLY FRAGILE AT TIMES.

I CAN'T ALWAYS REMEMBER AND CANNOT ALWAYS TOLERATE CROWDED PLACES. I HAVE NO IDEA IF THIS WILL GET WORSE, BUT I DO KNOW IT ISN'T GOING TO GET BETTER.  THE TREATMENT IS ONLY A DOORSTOP, NOT A CURE! AND YES, I KNOW I AM AGING BUT THIS IS SOMETHING ELSE ENTIRELY DIFFERENT AND *NOT* RELATED TO MY AGE!!

PLEASE DON'T PATRONIZE ME WITH YOUR OPINION THAT 'EVERYBODY GETS IT' OR TRY MISGUIDED ATTEMPTS AT OPTIMISM. INSTEAD *LISTEN* TO WHAT I AM TELLING YOU!! I DON'T WANT YOU TO FEEL SORRY FOR, OR PITY ME, OR CALL ME A HERO. ALL I WANT IS YOUR UNDERSTANDING PLUS VERY OCCASIONALLY YOUR PATIENCE AND HELP!

END OF!!

That clear enough folks?"




Friday, 16 January 2015

Happy New Year and All That...

Mega apologies for taking time with this post. Well had a quiet December waiting for my right elbow to heal but due to the kindness of friends & family,  did have a little treatette last week after going up to London to see Ben Miller in a play reading by Bruce McKay about a 16th Century Priest called Bartolome De Las Casas. This chap had realized the very cruel treatment of the indigenous peoples of Mexico and the Caribean by the Spanish invaders was simply not on. He did his best to fight for the rights of the local natives, eventually setting up his own Dominican order to serve those affected. Cutting a very long story short, 

De Las Casas in effect was the first known human rights campaigner. He made mistakes along the way, but learned from them. My personal feeling is that he was very lucky not to be tried for heresy as one of the ideas he put forward went against the idea that such genocide and slavery of the indigenous people had no souls.

The event was a fund raiser for the charity Survival and also for the collections library of the Middle Temple Hall where rare books are preserved. of which one is by De Las Casas. The play itself, held in the Middle Temple Hall was funny but also moving and very thought provoking. Apparently there are many indigenous people who have not had any contact with the outside world as yet. Many who who were at the event, as I do, hope it never happens as the locals never seem to come off well but with the ever expanding need for land etc, it will happen sooner or later. Survival aims to help indigenous tribes to have and maintain their autonomy for both their land and heritage.

Survival's aim is a great one, but it makes me think of the autonomy and rights of those of us who are disabled, long term ill/injured and generally vulnerable in many ways, find our rights and autonomy have been gradually eroded for the sake of 'autonomy'. Now, I am very lucky in the fact all I need is a stick and care with what I do to function plus a small pension which covers my mortgage, but for many things like access, care, finance etc are hard to maintain with the increase in the cost of living. It now can take between 4 to 26 weeks for decisions about benefits including Employment Support Allowance (formally Incapacity Benefit) and Disability Living allowance, both soon to become Universal Credit and Personal Independence Payment. The problem, especially with he last one, having looked at the descriptors, which looks more at the effect the ailment has on day to day living, some do not take in to account conditions do fluctuate. 

Now, yes of course, there has to be a check to make sure applicants are genuine, but considering fraud rates about 1% (ok that's 1% too many), the 'checking system' has turned into a ruthless effort to ensure as few as possible who are entitled and need benefits and help just don't get it. For a disabled person to have to wait up to six months for DLA/PIP is nothing short of ridiculous and cruel. I'm still waiting for mine and got my local MP, Andrew George on the case but all he can do is inquire about it. The letter got back was that my application came in very late and was not received by that particular department (for renewals) until August as opposed to May. 

What actually happened was that it was sent in on time but somehow ended up in the 'wrong department' before being sent to the right one, despite frequent phone calls from my advocate (the letter incorrectly stated I had phoned as well), and that the people Andrew spoke to said they could not influence the time it will take for a decision to be made, even though it had already been three months since they receive the application. Oh yes they can! There are those whose MPs have inquired and/or did more and who deservedly managed to get their constituents their benefits asap! It has been 8 months now and I can see what will happen is, time will go on for so long I will be forced to reapply again which will mean another 26 weeks minimum to wait. I have pretty much given up now and realize that I won't get DLA and PIP no matter how much I need it .

So, why do we have to jump through so many hoops now? For me it is more a matter of finances because the cost of living has gone up so much it is getting more difficult to pay the bills, as well has having to pay for transport for treatment etc. For others it will be more as carers have to be paid for, taxis needed because not all areas have buses with wheelchair access and so forth. it is definitely a case now of  'Please Sir, I need some more' and like the unfortunate Oliver Twist, we are hauled off for daring to ask for what is ours anyway, and made to be examples of those who are 'stretching the economy and what have you. For the last 15 years, both Labour and Conservatives (and sadly the LibDems whom I used to support but not now) have started to erode social care due to 'costs'.

A society is often judged on how it treats it's most vulnerable citizens and the UK far from being the 'easy touch' the right wing press would have it to be in terms of social welfare, it has become the exact opposite I think. Social and health care continues to be eroded from under our feet and those who find themselves out of work, ill, disabled, in poor social circumstances are being subjected to ever increasing barriers. I even get paranoid enough to think there's a 'euthanasia by stealth' that those who are entitled to claim or who are being forced in a never ending appeals process, so they don't bother to reapply as the stress is too much or will die before the claim is processed, thereby conveniently reducing the claimant numbers by 'natural wastage'.

Then there are the suicides. Yes, folks, be assured that there are more suicides being reported because those who have been driven to despair with having to deal with Job Centre Plus or the Department of Work and Pensions, who are ill or dying but being found to have the capacity to work, or being sanctioned to for not attending meetings, when they have not been informed in the first place finally can take no more, as well as the time it takes for a claim to be processed. So to those who are moaning about us 'sponging scroungers' be assured again we're beginning to die off now so will save you money.

Yes, we do have a better life in the UK than in most countries but for her vulnerable citizens, that is changing. I am beginning to wish we had Bartolome De Las Casa to speak for us.

Friday, 21 November 2014

Being Punished by the DWP for Being Disabled

After such a lovely day yesterday attending the University of  Plymouth Centre of Excellence launch, sadly I've hit rock bottom today with the realisation it has been SIX MONTHS, I repeat SIX MONTHS since I last had a Disability Living Allowance (DLA) payment and also sent in my renewal form.

Let me repeat the time span again, and I hope my MP Andrew George is listening as I have contacted him privately, also via Twitter and Facebook, SIX MONTHS for a benefit I am entitled to. The excuse from the Department of Work and Pensions (DWP), is that the application was 'put on the wrong pile' which was for applications for the new Personal Independence Payment (PIP) benefit which is replacing DLA and I am supposed to be assessed for *next* year! They still cannot decide whether the renewal form can be used for a PIP application or not. I have an advocate who has tried her best but there is *still* no answer from the DWP about it.

I am 54 (or will be on Sunday) as most of you know, I have an inoperable brain tumour and will not be getting better. I don't know what else to do and would ask the same question that that tens of thousands of us who find ourselves in this situation right now, why am I being punished for something that isn't my fault?

It's bad enough to feel most days - at best - useless and a burden to society with added worries about bills etc. Plus I want to live as full as a life as possible, to contribute where and when I can which is actually a basic human right, according to the Equality Act of 2010! This does not fill me with a great deal of confidence about the Employment Support Allowance I currently receive but will have to be assessed for next year. In this case I will be assessed for my 'capacity' to work, not as to whether I am actually fit to be employed or not.

So I will ask again, WHY AM I AND THOUSANDS OF OTHERS BEING PUNISHED FOR BEING DISABLED/ILL! WHY AFTER SIX MONTHS IS THE DWP DRAGGING IT'S FEET WITH NO IDEA IF/WHEN I MIGHT GET DLA/PIP! SOME OF US (AND THIS COULD INCLUDE ME AT SOME POINT) DO NOT HAVE THE LIFE SPAN LEFT TO WAIT! WHY AM I HAVING TO RELY ON FAMILY AND FRIENDS FOR FINANCIAL SUPPORT WHEN 32 YEARS OF FULL TIME NATIONAL INSURANCE PAYMENTS AND PAYING IN TO AN OCCUPATIONAL PENSION SHOULD BE DOING THAT!!!

...answers on a postcard please.

Thursday, 24 July 2014

Of Lobbying and Pythons

Been a little while since I’ve posted so it’s about time I knuckled down and did another one!

I have been on my adventures with visiting Parliament again, this time with the Brain Tumour Charity and Brain Tumour Research to lobby an all-party parliamentary committee about research funding. The aim was to plead the case that funding for brain tumour research is woefully short of what is needed, and the importance of ongoing research looking at viable treatments, tumour types, aetiology etc.  The case was put by experts working in the field, including Dr Nathan Richardson, Head of Molecular and Cellular Medicine at the Medical Research Council and Professor Sebastian Bradner, Professor and Chair of Neuropathology at University College London and what they got back, I feel, was a load of old flannel about the issue. 

My memory is letting me down as I write because I cannot for the life of me remember who the government lackey was to respond and we were also joined by the Rt. Hon David Millets MP who is the Minister for Universities and Science. There has to be a quorum of MP’s to oversee these meetings (3) for the first 35 minutes at least. Anyway, cutting a  very long story short, the bods made a solid point about funding for brain tumour being about £3.5 million (which wouldn’t even so much as get you a garden shed in certain parts of London) compared with other cancer research programmes receiving about 10 times as much.

The problem seems to stem from the fact the application for research funding (which is also in part looked at by the pharmaceutical companies) is a very difficult process with so many trying to get a share of a small pot. Usually charitable donations are matched by the govt but we don’t even come up on quite a few people’s radar for that sort of thing. Whilst it is true that Breast Cancer, Leukaemia, bowel cancer, oesophageal cancer etc are more common, it was restated that malignant brain tumours are still one of the biggest killers for the under 40’s and the huge differences between paediatric tumours and adult ones and can vary in type and effect. 

The fact is, with the greatest respect, the others have only one or two cell types to research, but with the brain there’s over 120! The other problem (and this was a big issue with diseases such as Parkinson’s) is something called the blood brain barrier, which is a natural protection of the brain where certain toxins are blocked from entering the brain and spinal cord.  The problem is that a lot of chemotherapy is affected by this and part of the problem is finding more effective treatment.  The cells themselves cause problems, such as there’s one hell of difference between say my type of tumour, where it arises out of the meninges, the inner layer of three membranes that surround the brain and spinal cord, to a glial cell in the brain matter itself. There are other factors to consider such as age, impact on other parts of the brain and the body, damage, toxicity and side effects which for most, comes on top of having surgery and radiotherapy.

But even so, part of the flannel we got back was how we would benefit from results of other cancer research which is also true, to a point but still that does not cover the unique nature of the brain and anything that affects its cell growth, type and function. Even with my slow growing Algy, the fact alone tumours form in an encapsulated space  is a huge danger in itself with the resulting damage to surrounding tissue and even though the word ‘benign cancer’ which is used, is meant to reassure the patient, it is still a cancer by location.

There were so many points raised but I wonder if the Government use put off tactics to discourage applicants? Certainly the Govt representative was very repetitive with his answers so no assurances were made and came across to be as being a little dismissive, but they would look into the matter. 

What puzzles me in Parliament, several MP’s have had family members and others suffer brain tumours, and of course there was the greatest politician in my eyes, Mo Mowlem, who even with her terminal brain tumour, managed to bring much needed resolutions to the political problems in Northern Ireland. Surely in her memory there could be a greater political sympathy that could honour her achievements. I was going to raise that point, but didn’t as that’s a whole different issue.

Summary of Points:

Research needs to increase to look at the processes of cell mutation and causes. More support needed from other charities out in the cancer field to support our own with fund raising.
Need to look at the chemical interactions of Chemo and how this can affect any future treatment.

It is acknowledge that there is a high attrition rate for funding applications, but it is felt applications for brain tumour research are probably being deliberately overlooked in favour of other applicants.

We understand that a robust case has to be presented for research and what could be useable result. Is there going to be any immediate benefits? I.e. what’s in it for us and can we make money out of it!

My own personal opinion is that we really could do with more clout politically and in general. The cases put were on the spot and people are dying as a result of lack of knowledge and I have to say lack of awareness, which was brought up in another meeting and to be looked at again in September. I think also because we are rather in the minority we are going to lose out to the bigger charities such as Cancer Research UK who do *not* have our best interests at heart, but smaller charities involved with brain tumours are doing a sterling job but we need more. 

I still have a huge problem with the statements brain tumours are rare but a large cancer killer none the lass. It doesn’t seem logical to me, you can’t have both so would like to see more robust statistics with that.  I know of at least of 9 people in Penzance who have tumours, some sadly dead and a couple incapacitated. In this last week I have passed on details of the Brain Tumour Support group to a person about to undergo surgery and a 19 year old man who has just been diagnosed.

Also our local MP, Andrew George’s brother had one. These in particular I am going to follow up on because I know what it’s like to go through the processes and come out with arms flapping, not knowing what the hell to do next. The clout needs to be across the board and influential as well as from local groups. Also it is my personal opinion,that the brain tumour community need to be more cohesive as a united front as numbers do count.

One of the Brain Tumour Charity’s patrons is actress comedian Dawn French, with our group one of our patros is actress Tracy Childs who nursed her husband singer Tony Anholt who died from his. We could do with more media and entertainment support, more political support. There is already international support with the International Brain Tumour Alliance and various academic and research institutions but still more cash and awareness is needed which is why personally I’m putting my big mouth to use and shouting very loudly about this.

We.Need.Your.Help.And.Support.

End of!

You can read the report presented to Parliament by Brain Tumour Research here:


Other bits.

There is a campaign called ‘Head Smart’ to raise awareness about brain tumours in children and they have produced leaflets to Pass on to schools, libraries, etc. They are also asking for support from local MP’s to encourage this campaign to be taken into the communities. We also need one for adults as well and this is being looked at I think and should come up in the next APPG meeting.

I am still trying to get info for my book about other people’s experiences with brain tumours, and have sent out 19 questionnaires but so far had three back plus one eventual refusal because the email attachment apparently was infected with malware, but I did not know this until I contacted the person concerned. So please, please, please if you have one, fill out the bits you want to share and send it back soon. If there are *any* problems, please let me know as I can’t help otherwise. I want my book not just to be about my story but yours as well, to be a voice and I can’t do that without your help.

My condition remains ‘stable’ except I have put back on a lot of weight – 30 lbs - by falling off the wagon so to speak, but have also had bloods taken for hormones and endocrine stuff, as it is possible my pituitary gland maybe affected, plus there is the ‘milestone’ (no pun intended) of now having that great indicator of middle age, gallstones! I have an appointment on the 14th August so I can be referred for an op to remove my gall bladder. Joy. Not!

Philosophy with The Bruce Academy at the O2. 
But despite there being improvements such as my seizures not being so intense or frequent, my memory has got a lot worse and I am also getting very clumsy again. Not so much with falls this time but with knocking things over, dropping and not being able to organise myself so well. In the last couple of days, I sent a display of books flying off a shelf in Waterstones in their Piccadilly store, dropped a suitcase on my foot, can’t seem to eat snacks or food without wearing most of it. I feel it too and can’t seem to control it with things being dropped, etc and to me there is some cognitive impairment. It can also be a sign of middle age and menopause but the radiotherapy will have brought these on as it can age the brain, add in to that my mum has Alzheimer’s Disease now, that’s one possibility of my future I’m not really relishing if I get that far.

My finances are in the crapper but you know what, I don’t care about that much to be honest. So long as the bills get paid and we still have a roof over our heads plus cat food for Sizzle, we’ll get by. In a way I’m having a ball, with trips to London to see our dear Ben Miller in various shows, twice with his comedy partner Alexander Armstrong that was fantastic, lobbying Parliament (which makes me feel *so* important…LOL!) helping out with a support group, advocating for a friend, steam rallies (yep it’s that time of year again!). Out comes the tent, willies, sunscreen, mozzie killer and Dave’s fabulous steam models! Plus my crochet to keep me going while I supervise the model and Dave goes off to the beer tent…LOL!!

I’m on the train now (stuck as usual due to signals) back home after seeing the last Monty Python live show ever, and tomorrow, sadly have a funeral to attend.  I know I am going to be shattered next week as when I get too active I tend to hit a brick wall, get very down and exhausted very quickly as fatigue is a part of this. I do tend to push myself even now but it’s just I have a chance to live a life that before was ruled by shifts and protocol, but I also have to accept and deal with the consequences of that.

And of course, there’s David to consider as well.

We’ve been together for 27 years now, nearly 23 of those married and I’m coming to realise how I much I do take him for granted sometimes. He’s a quiet but solid man who allows me a lot of freedom with my wanderlust and has always been that way. I want him to be more independent too as we’re both getting older with more medical problems that could keep a student doctor going for a few weeks. 

It’s true to say there are less days ahead of us than behind, and I know there will be a point where one or both of us will be incapacitated. Which brings me on to another, perhaps, less cheerful point – getting one’s affairs in order so I am going to encourage him to make a will (I already have done this for myself) and the two of us to draw up enduring power of attorney for the other. I've seen all too often the difficulties that occur when this hasn't been sorted and the resulting legal hassles can take months, if not years to sort out. Even though I’m up to my eyeballs in overdrafts etc, dead I am worth a bit which can pay off the mortgage. 

My biggest fear is David not having a roof over *his* head. That has worried me more since the start, more than even having a permanent guest inside my skull. I want to spare him as much as I possibly can, the legal hassles from bereavement, as if I pop my clogs before he does, he’ll have enough to contend with as it is. I want to know he will be cared for when I gone until, as is my spiritual belief, we can meet again in the afterlife.

But still I am also going to make sure we have fun and live a bit. Dave’s coming round to the idea of getting out more rather than just end up in a town pub. We’re both involved with The Ritz and will be until it is handed over to its new owner in a year or so. So really life ain't so bad for the minute, for which I am very, very grateful.

As the song says "Always Look on The Bright Side of Life", so I will do my very best to do that.

Anyone for an Ex-Parrot? A Norwegian Blue one...?

Tuesday, 17 June 2014

Positive Writing Vs Honest Writing

As most of you are becoming aware by now, my muse for writing keeps getting up and walking out of the door, which ain't good if one has decided to write a book! Anyway, before launching into this entry's main topic, I'll bring you up to date on my adventures.

I seem to be spending quite a bit of time commuting to London, much to the detriment of my overdraft and will have to pull back on that soon a) because we need to eat and b) because the bank is earning too much interest. But I am going up again Friday to see Ben Miller and his long time comedy partner Alexander Armstrong at a do in Kensington. I have seen our dear Ben a number of times this year, not just on seeing the Duck House but also at a masterclass and The Royal Albert Hall. Poor man must think I am stalking him!

The masterclass was at the Theatre Royal Haymarket just off Piccadilly and an *absolute* treasure. Ben used his experiences learned through his career to give invaluable advice to aspiring actors. Also he gave a very excellent answer to my question about his writing style and routine. This was a gem to me because I found out it's ok to have blank days and a nap counts as writing! But also what came across was to stick to a routine no matter what, with Ben introducing the concept of the '50 minute hour'. That is to write or give 50 minutes of writing time (whether any words appear or not) then take a 10 minute break. Ben usually works from 10am to 4pm on his writing days, and also takes about an hour for lunch. He also advises going for a walk at the end of the day's writing, taking a note book (he uses his iphone) to jot ideas, as that is the time you will likely be most inspired.

Brief video of Ben's experience at his masterclass click on this to see on YouTube.

Now I may not be up to a 6 hour writing day but certainly with the '50 minute hour' where you also use a timer or set an alarm for the hour - I have managed to get a lot more done although progress remains a little slow, because of variable energy and the fact my concentration isn't quite as good as it was. Ben also advised that when the alarm goes off, you stop writing, no matter what and take that break or finish for the day and also, when you decide you want to change everything, it's probably likely your work is complete.

By 'eck I was an 'ansum maid back in 1978 :)
So with dragging my muse back online (I also have a fanfic series I am seriously behind on) I thought I had better update this blog. I have already managed to complete the first chapter of my book but need to start factoring in the experiences of others. The idea of the book is not only write my own story but compare it with that of others. Although our individual journeys maybe vastly different, common themes are becoming more apparent and this can be backed up with anecdotes from the support groups, tweets on #BrainTumourThursday as well as face to face. So I have to get around to researching at some point.

Getting back to writing styles. I recently went to a 'college reunion' meeting up with folk most I haven't seen in nearly 35 years much to my joy, at the home of one, a beautiful house near Stroud. Looking at the photos of us all so young, naive and with our dreams yet undashed, was an experience especially seeing how gorgeous we *all* looked at 17 - 18 years old.  Sadly of course, there have been losses along the way, one I felt more keenly  a friend called called Rose, who was a beautiful woman and had modeled for Vogue when she was 15 years old. Apparently Rose became blindin one eye and died possibly from cancer. From what I can gather it seems that maybe the sight loss and a tumour somewhere were related which killed her, and of course, you all can guess what I am thinking about in terms of the type of cancer.

Old college codgers
Sadly, back in Penzance, I have found out two more people we know have been afflicted by brain tumours. One used to be my second in command at the lookout I used to run under the auspices of The National Coastwatch Institution, who has ended up in a nursing home after his 'benign' tumour did a considerable amount of damage, and another aquaintance, an antiques dealer has been diagnosed with terminal brain cancer.

And here's the thing, the main point of this entry. I have told you some sad stuff and looking back over this blog, have written much about depression. One of those at the college reunion said he enjoyed this blog but tended to be turned off by some of the 'maudlin' posts here and on Facebook. At the time I felt a little bad about this, but then it dawned on me, that again being positive and 'inspiring' might be very well, but it takes energy which I don;t always have. I want this to be an honest account of my experiences, not just a 'Mary Poppins' type of blog. There is some very uplifting stuff out there from people who inspire me and has given hope to many, but at the same time as much as I want this to be a positive inspiration and informative, I need it to be an honest one too. As said before, this isn't a 'pity me' or 'admire me' blog, but one I hope that someone will read and think 'Thank God I'm not the only one that feels this way', as that's what has helped me the most when reading other people's experiences.

There is room, a lot of room for all types of writing styles,.Some will look for only the hugely inspiring, uplifting stuff, which is fine and necessary, but others such as myself prefer also to read more honest accounts too. I hope this blog does the same, although in saying that, it is good to get feedback and it helps me put things into perspective so I don't end up writing a 'pity' blog. I am not criticizing other blogs, just saying what works for me.

So if you find this blog turns you off sometimes, that's ok but it will not alter what I have to say. This is my account and it will stay that way. It's my writing style for which I make no apology.


Ohh! Get her in a Parliamentary Committee Room!
Other news. I found myself back in Parliament, this time with the Brain Tumour Charity and an all party cross committee meeting about issues surrounding brain tumour care in the UK. I heard some harrowing accounts of how people were either pushed out of their work because of the time it can take to receive and recover from treatment. The tale I found most upsetting was that of a family whose son who had collapsed at a school football match and how difficult it was to get a diagnosis and sadly when they did, the treatment needed to save his life caused a lot of damage but it was to no avail, so they had taken their son home to die.

What saddened me the most, apart from the terminal prognosis, was the fact the young lad needed to be fed by a tube - enteral feeding either by naso-gastic tube where a tube is passed through nose into stomach or PEG (percutaneous endoscopic gastrostomy feeding) where a tube is passed through a hole (stoma) made into the stomach just below where the breastbone ends, and in both cases, special liquid is given by a pump. The family had no training on how to use the machine and local district nurses in their area refused to administer medication as they were not covered to do so. I find this shocking because even in my tiny, half forgotten neck of the woods we would *never* allow someone to be discharged with one of those things without full back up and training.

The meeting revealed the disparity of treatment and care standards in the UK, with some areas better than others with support and what have you. There is still great difficulty with getting a diagnosis, GPs being reluctant in making referrals as cost is always a factor. GPs *can* make direct appointment for emergency CT and MRI scans and I wish they would for those with sudden onsets of neurological symptoms, collapses and/or persistent headaches. The most telling part of the afternoon was a comment from a representative of the International Brain Tumor Alliance, why were we still discussing the same issues ten years later. That to me was a wake up call which really should leave us feeling somewhat ashamed that after a decade, the same problems still exist.

Getting away from brain tumours. There were also a couple of events, one of which was a fantastic day yet resulted in a mass disappointment! Now as nearly everyone on the planet knows, Penzance is very much associated with pirates and a few years back, Hastings (a town more renowned for arrows and their own battles) dared to get a world record for having the most pirates ( people dressed as pirates) in one place. Well, we weren't going to stand for this! So went and broke Hastings' record in 2010 with 8,734 pirates on our prom. The buggers then beat *our* record with about 14,200 pirates! Were we going to stand for this? No! So this year after a *lot* of preparation, headaches, getting the thing organised etc, we... failed to beat Hastings' record by being short of a mere 77 people..!! *head desk* *head desk* head desk* *head desk* *head desk*!!!! A similar problem occurred as with our previous, more successful event, that people left getting entry into the staging area until the last minute and caused a bit of a backlog to the point they all could not get in.

BUT...

Meet Dangerous Lord Dave Nicholson of Rosevean..Yaaaaarrr!!!
We'll do 'un again m'ansums!!!

The latest adventure involved traveling to The Royal Albert Hall for a concert called 'Symfunny'. This was organised in aid of the Parkinson's Disease Association by composer James Morgan, who was diagnosed with early onset Parkinson's Disease at 40 years old. It was fantastic evening with lots of music and comedy, compared by Al Murray 'The Pub Landlord', with guests such as Alfie Boe, Jane Asher and Sarah Brightman as 'guest conductors' and music including my one of my fave classics, 'Zadok The Priest'.

Of course, the highlight for me and a friend called Margo, was to see Ben Miller and Alexander Armstrong reprise their excellent Flanders and Swan parody, 'Brabbins and Fyffe', who songs have lyrics of the risque, toilet humour ilk and very, very funny. The two they performed were 'The Perineum Song' and 'Have You Ever Taken a Sh* t On A Train' with a choral ending to the last song, much to the delight of the audience. The evening, quite simply was divine! Margo and I did hang around the stage door at the end to hopefully see Alexander Armstrong who sadly didn't appear, having left earlier (he was kind enough to tweet us both afterwards), and Margo became very tired (she has multiple sclerosis) so had to :eave. Ever stubborn I remained and managed to not only be able to meet Ben again but also have a brief chat with his lovely wife, Jessica Parker, a producer. Mind you when I say 'chat', it was more my babbling complete bloody nonsense, as usual for which I can only apologize!

The fantastically funny Brabbins and Fyffe (Alexander Armstrong and
Ben Miller) reminding me about my
experiences with some 'facilities' on trains.

That's it for now. Until next time, take care and have fun. :)

Wednesday, 2 April 2014

Algy's Demise. Bloody hell! 1/4 of The Year Gone!



Ok, first up. Many apologies for wasting 3 months of 2014 before blogging again! And a highly belated Happy New Year!

So after a winter of storms, flooding and depression, one has survived and hopefully getting her mojo back!

News:

With the lovely Gary Carr after 'The Pass' at the Royal Court Theatre in Sloan Squre.
Have been getting a bit 'Activist' this year which started out heading up to London in February for two events, one to see a colleague of Ben Miller and Danny John-Jules, Gary Carr (above), who stars as 'Fidel Best' in 'Death in Paradise' plus also in the last series of 'Downton Abbey' as jazz singer Jack Ross. Gary was in a play with Russel Tovey called 'The Pass' about two footballers, one who went on to great things and the other who settled into private life and a solid relationship. It was a fab play, quite close to the knuckle with an honest look at same gender relationships and assumptions.


I also went up to lend support to those who have fought to keep Lewisham Hospital open via the Hational Health Action Party http://nhap.org/ who are trying to prevent the destruction of the NHS.


Protesting outside Parliament 

It was interesting as they had held a rally outside Parliament and then we were invited in for a discussion with the Shadow Secretary of State for Health, Andy Burnham MP, about the time Angela Merkels was in the building as well!


With Andy Burnham MP in a committee room in Parliament!
Next on to Leicester. As most of the planet knows, I am a *huge* fan of actor, comedian, writer, producer and director Ben Miller, and managed to stalk... I mean meet him on a couple of occasions this year. First at a SciFi event,  then 2 weekends ago in London with other fans before seeing him (again for me) in Dan Patterson and Colin Swash's fab play 'the Duck House' that has now completed it's run, and has been nominated for an Olivier Award for best new comedy play.

With ben and yes, that is Detective Inspector Richard Poole's actual Briefcase! I won that and
the rest of Richard Poole's costume as used by Ben in a Radio Times competition. Great keepsake :D
And also got he and Danny John-Jules, his co star in Death in Paradise (which Ben, very sadly has left! *sniffles* ) to wear bandanas for brain tumours this year!


Top Pic L - R  Margo Milne (in front), Melli Tyler, Stephanie Wunder, Ben Miller Sabine Wunder-Reppingen, Monica Mascuillo, Me, Gilly Henwood. Bottom Pic - the Cool cat himself, Danny John-Jules!

But I digress! Also a very dear friend took me to Rome for 4 days and we had a fabulous time there, visiting the Colosseum and the Vatican/St Peter's Basilica. I even made it up to the top of the dome of St Peter's as well since it was a beautiful sunny day, and the view across Rome was spectacular!

My B&W take on the Colosseum. Spectacular place!



My dear friend Debbie Carter who not only took me to Rome but slogged her guts out pushing me around the Vatican Museum in a wheelchair! Here we're scoffing beautiful creamy Italian ice cream aka 'Gelato' :)~

The dome of St Peter's Basilica from the inside of the chapel.

The climb to the top of the Dome damned near killed me, but it was worth it for this view :D



But for all this, Algy, as fried as he is, still managed to put in the boot. By day 3 of our trip I began to get disorientated and tired. When we got back to the UK, I stayed with my friend in Chichester and scared her half to death when we had to go across a rail crossing. I was wandering straight in to traffic and didn't think about it as I lost sight of the pavement. I heard my friend scream and looked round thinking she was stuck and a train was coming. But it wasn't that. it was I had completely become unaware of the danger I was putting myself in. And also fatigue has reared it's ugly head in the last week, so I have to *make* myself shift and get on with things.

My memory has become a little worse too. I am constantly losing things and on the worst days forgetting events etc This could be a long term side effect of radio therapy, but also I am pottering about with the menopause which does not help. Also nearly keeled over in Penzance yesterday when everything went a bit strange to say the least, so am staying in today.

Other news:

The charity 'Hammer Out' re-branded and relaunched yesterday and are now known as 'Brain Tmour Support' so will need to update info on that. It's good to see the charity develop and they can now be found at http://braintumoursupport.weebly.com/ 

Lastly there has been some sadness at Nicholson Towers, apart from the winter depressions Dave and I both suffer from, and that is our older cat Danny had to be humanely put to sleep due to suddenly going in to a massive seizure that never truly resolved. He had been getting quite frail over something similar that had happened back in 2010 but had settled after a while. Certainly Danny did get a lot of seizures in his sleep but in his waking life coped ok but for the odd occasion he would lose the use of his back legs or his balance now and then. Of course we all know what that can be a symptom off and I am pretty sure Danny had developed the same. His quality of life was good though, so Dave and I did our best to make his remaining years comfortable. Dave especially is upset as he and Danny were very close indeed, especially in the last year, when Danny would cuddle up to Dave, the two being 'lads' together.

2014 outlook.
I'm heading up to London to give support to the Brain Tumour Charity www.braintumouruk.org on April 8th, with a cross party committee meeting in Parliament, about funding. I haven't had final confirmation yet but I know a seat is booked.

Then will be heading to Gloucester hoping to attend a college reunion (sans ice-pick! Death in Paradise fans will understand my meaning!), head up to Wales to see my family, and help try to break a world record in Penzance. And that's just May!

Of course, I am broke again after enjoying myself too much and that's not going to stop either. Had a fab time as said before with seeing Ben twice this year already and will do so again on June 4th.  He and his comedy partner Alexander Armstrong will be on stage at The Royal Albert Hall for a benefit concert 'Symfunny' in aid of Parkinsons UK.  I did possess many moons ago a Parkinson's Disease Specialist Nurse qualification, with studying for the module as part of my clinical education. I saw more elderly affected but can remember some very sad examples of a more aggressive type which tended to hit those of younger age, and of course this can be fatal. This event is the brainchild of music producer, composer and conductor James Morgan.

From the Website page, Morgan's bio is "He was diagnosed with Young Onset Parkinson's at the age of 42. He and his partner and fellow producer Juliette Pochin immediately saw the importance of using their musical connections to highlight the impact of Parkinson's and to show that it is possible to continue to work and live life to the full after diagnosis, as James continues to do."

So if you want to attend this, get and book now as tickets are going fast. The web address is http://www.royalalberthall.com/tickets/symfunny/default.aspx.

Also I have just squandered £33.50 on a ticket to go and see the Monty Python team on their very last performance together (so it is said) on the 20th July at the O2 in London. Just hope to goodness that's not the St Buryan Show weekend!

In September I should be heading up to The Royal Marsen for an MRI to see if Algy is behaving himself, so *fingers crossed* on that one!

*Finally* I got started on my planned tome 'Adventures with Algy' by making a start on my own story which as it turns out, is harder than I thought. I have also decided to treat this like a Job, with set hours and times to have a good write. I'm going to write for 30 mins every other day. It doesn't sound much, but with a timer to work to I'm getting more on paper and it helps organise my thoughts and suits my concentration levels as well. My concentration and memory span has decreased quite a bit and I have to be careful not to stretch myself too much, or if I do, then plan when to do it and expect fallout afterwards. The three events above were close together and I'm getting fall out now, but they were so worth doing :) After all, Algy or not, I still want to have a life.

So that's about it for now. Comments as always are welcome.

Sunday, 22 December 2013

Hev's Not So Merry Christmas Speech

Here's my Christmas Speech and it's not going to be a cheerful one.



Depression is not an uncommon illness and a lot of us will face mental health issues at some point in our lives.  One of the things I have also had to accept is that this time of year is not the happiest for me now anyway. Also It'll be the 10th anniversary of my dear friend Veronica's death from her malignant brain tumour tomorrow (23rd December) at aged 48.  Plus since Algy, winter has become a difficult time in general.

(Below is extracted from Facebook)

I discovered yesterday just how depressed I have become. The positive part of me needs a break & it will be back soon I hope, so I ask you to please be patient with the negative. 

I'll try not to be morose but won't put on a brave face either. Hopefully things will improve soon but again, please no more advice on 'being positive', 'not cutting the small stuff' etc. It takes *energy* to be positive, energy I don't have right now. I have 'cut the big stuff' with having and living with a brain tumour, but it is the small everyday stuff that *is* frustrating because the 'big stuff' effects it so much.

In short please accept that I am having to finally acknowledge that I am still grieving for the loss of my career, skills plus a large part of my self worth. I'm not after pity, sympathy, anything like that but just your understanding and patience. I'm not doing a 'poor me' because I am not 'poor' but very well blessed.  I told my husband Dave what is happening and how irrational and obsessed I seem to be getting over Twitter, my memory problems, goodness knows what else etc. He didn't laugh or get upset about this, but just gave me a *big* hug instead and we discussed my feelings later in the evening.

Dave had a similar problem after the death of a very good friend of his some years back, although his anger was directed at another friend whom Dave felt at the time wasn't giving him enough attention. This was an irrational feeling because this friend of his was always there during Dave's bereavement, and Dave thinks what I am going through is a similar thing.

I realized when Dave said this, that what is happening is I am still not able to 'close the book' on my past life i.e. my career which was my life for the best part of 32 years and I am still grieving over that loss now. 
However, I have to *allow* myself to grieve, finally face the ghosts and monsters of my past, present, fear of/for the future (sounds very Dickens), obsessions and irrational feelings of abandonment.  Hopefully if I can do that, then maybe I can move forward in to the next phase of my life and deal with whatever this is more effectively.  

After all, one cannot get rid of the elephant in the fridge, until you can accept it is there standing in the butter dish in the first place.

Wishing you all a Happy Christmas plus hopefully a peaceful and prosperous, trouble free 2014.  And thank you, *all* of you for your friendship, support, help and encouragement over the last year.

 Much Love,

Hev XXXXXX