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

Wednesday, 27 November 2013

Algy's Demise - On Saying The Final Goodbye.

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'.

Thursday, 21 November 2013

Algy's Demise - Fangirly Special: Questions from an Actor - Some More Info.

I'm literally crashing out this week as my entire November supply of energy was used up with a trip to Nottingham to see actor/comedian Ben Miller in a fantastically funny play called 'The Duck House'. After that I headed down to Plymouth afterwards for my favorite annual event, ArmadaCon - a small scifi convention celebrating 25 years with most of us still standing after all that time!

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. 

Me, Julie Liddle, Robyn Teague, Katrina Pearce, Ann Coles at the meeting.

Personally I am glad I decided to be treated at the Royal Marsden because I have had the support there which I don't think I would have had at Derriford. I also had to put my foot down a bit about getting treatment as my symptoms were getting worse but there was a reluctance to start it. Please be reassured though that the Oncology Clinical Nurse Practitioners themselves at Derriford are brilliant, but they're not always being advised of those with low grade tumours who have had (often extensive) treatment but have been left with very little or no support afterwards.

Thinking about it now, my heart is breaking because I revealed to the group how I had to basically sort out my own 'rehab' as (I have been told) there is no vestibular trained physiotherapist in Cornwall and had to hunt for support via the internet, which took some time to do as well as coping with the loss of my career etc.

Right now, as brilliant as the meeting has been, in the last hour or so having thought about what has been discussed today it has opened some old wounds and brought back memories of feelings of fear, frustration, loneliness, hopelessness and being useless and am actually shedding a tear as I write this. I wish I could have found Hammer Out sooner. But my family, friends, all of you here were and continue to be brilliant with your support and I wonder if I would have fared so well without it.

Lets hope that the Cornwall support groups that a friend and I will be involved in will help those affected. Next task is to get the info out there but any Penzance GP here, I'm going to ask a question, although I have passed on info about Hammer Out and the support groups, why aren't the notices being displayed in your waiting room notice boards? Such a simple thing can help someone though a terrible time with their brain tumour, non-malignant or not.

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. 

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.