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.

Saturday, 19 October 2013

Algy's Demise - Mental Health and Brain Tumours; My Confession.

I have had a series of melt downs of late, which is to be expected considering the underlying stress that is always present no matter how 'benign' Algy  is in terms of size and effect.  But I have noticed the things I usually enjoy are now becoming sources of great anxiety.

Having a look back through this blog, most posts are about my feelings and emotions than anything else.  I find it therapeutic to write so yes, it's a given but also I have noticed the rise in the frequency and severity of meltdowns which can be at risk of getting out of control if not dealt with.

I hate to say this, but social media - or more correctly, Twitter and Facebook is my conduit to the world but that seems to be changing.  It's not the medium itself but how I have used it plus my expectations of  it,  becoming dependant  not just for company and news, but also a place of bolstering my self esteem .

It has become the place where I lay my 'back-to-adolescent' insecurities, anxieties, need to be noticed, to be reassured, to be validated as a person.  In short I have become addicted and worry one day I will go too far in terms of my neediness and will lose those I follow there and have become friendly with..

On reflection, I seem to be more prone to mood swings which I wonder is bordering on obsessive behaviour , plus what also isn't helping is the menopause which I am starting.

So am I just going nuts? Being childish? Or maybe there's more to this than my time of life and maturity issues?

Most emotional changes are natural responses to being placed in a situation that by it's very nature is a great cause of stress, especially with having to deal with the changes and effects placed on ones life style and responsibility. 

Neurological diseases and disorders can and do have mental health illness as a symptom,  not in the least brain tumours as some will impact on areas of the brain where emotions, thought processes, memory function etc originate. Add to that effects on the cells where the nerves originate impacting on movement and physical function, all can add distress.

Most Obvious are:

Fear, anxiety, anger, sadness/grief, insecurity, denial of the stress, losing perspective, increased tendency to arguments, width drawl and increased isolation, obsessions, obsessive compulsive disorder, possible loss of reality, inability to cope, depressions, changes to personality, increased mood swings/highs/lows

Also

Memory loss, confusion, exacerbation of current mental illness such as psychosis, dementia, etc.  Onset of new mental illness such as anxiety and neurosis, depression, cognitive changes. Depressive disorders. Personality disorders as well as the above which will have an impact on physical function.

The above list is by no means exhaustive. Also it should not be taken that you might have any or all of these, but it does have to be recognised.  Often the onset can be gradual or may have nothing to do with the brain tumour, that it can be a problem arising from other illnessess.

My own particular situation is one maybe borne from dealing with changes to my personal life and I have to admit my underlying fear for the future and becoming 'persona non gratis'. As said before I have that wonderful thing called 'The Menopause' which as much as some would hail as being a positive milestone for women, has been a prized pain in the ass for me, not helping my moods what so ever!  But I guess at least having an awareness of these means at least I am not going certifiably crazy - yet!

I do have a long way to go in terms of awareness, self honesty and dealing with the future.  There is so much I want to do, and I genuinely want to reach out to others and make a contribution.  But I also have to recognise my limits and recognise when my reactions are becoming unhealthy and unrealistic.  It's a sobering thought, something we all have to be aware off whether fit or not, and also accept that others around us may not always be in a position to help or even understand.

Reaching is out is important and quite often, whether we like it or not, others are more likely to see the changes before we do and that is difficult as it can lead  to conflict or abandonment from either side.  Some really cannot deal with the issues and some may not want to.  Much heartache can usually and does result which is why it *is* important to consider mental health needs along side the physical ones when discussing care and symotoms with your doctor.

Here's a quote from a web page which sums up the issues well.

"Brain tumors  can cause seizures, mental changes, and mood, personality, and emotional changes. Tumors may also impair muscle function, hearing, vision, speech, and other neurologic activities. Such effects can be very difficult for both patients and caregivers."

From The Avera Website

Also there's a handy info sheet from an Australia you can find at Beyond Blue Site (Ausralia) This page will open up as a 'pdf document' and you will need a reader for this. A free one can be found here Adobe Reader Website

Hopefully my particular issues will settle in time as I recover from radiotherapy. But an inflamed Algy has a lot of impact and certainly this needs monitoring but not something to be afraid of so long as I am sensible, see it for  what it is and seek help when necessary.

Monday, 14 October 2013

Algy's Demise - On Charity and Volcanic explosions

Ok, I'm having another 'moment' or more precisely a moment that is turning in to a long moment. Sleep has been rare of late, at first due to facial pain but now because my sleep pattern has well and truly gone up the spout! And when I get overtired, explosions occur in volume similar to Mount St Helen's, Vesuvius and Krakatoa!

Apart from the lack of sleep, what set me off yesterday was a quite innocent tweet from someone who follows me on twitter (and others on her list) telling me I had thirty minutes to get in on a charity action for a children's hospice. In true fashion I overreacted first of all tweeting back how sadly I couldn't join in, but the reply made me BLOW!! At that point, I angrily departed saying I had it with twitter and goodbye! Luckily I have some very understanding friends who calmed me down. I tweeted the sender and gave her a dressing down she would not forget, so hopefully that in the future she will take a little more care on how to send out such tweets and eithre not send them out individually and also only to ask to spread the news about any event.

The reason is this. As anyone who has had to recover or adjust to a long term illness, there's one thing that can hit you harder that your health and that  is what it can do to your financial security. 

Even with insurance, which sadly I never qualified for due to other medical conditions, it still depends on whether you qualify under their terms of agreement whether you can get the payout you have invested in. Also, what about job security? The ability to pay bills such as mortgages, cat insurance and tax, utilities, clothes for the kids, food and vets for the dog, your actual financial status, your appearance ("you don't look like you're ill" might be a compliment but it can also mean something else), costs of getting to and fro for treatment. Not everyone lives close to one of the eleven treatment centres in the UK. There is all that to consider never mind feeling ill and undergoing whatever treatment is needed.

Don't upset me. You really *don't* want to upset me.....

And when you have gone through months of worry, maybe surgery, radiotherapy and chemotherapy, would you be fit enough to return for work, or will you continue to be ill, not able to sufficientlky recover and then basically sacked because you are no longer able to fulfil your terms of contract, what about then? What about your savings, applying for benefit?  What happens when you find out your application for Employment Support Allowance or Universal Credit which is less a month than you would normally spend on petrol and than you have to re-apply as you most likely will be automatically turned down and have to appeal, of which there is no time limit and no money paid to you until after (you hope) you will win the appeal.

And the same goes for Disability Living Allowance or personal independance paymentents as it is called now.  Problem with the application forms you have to be savvy at what you put down which is what you are like on your absolute worst day and if you are called for a medical assessment be sure the person assessing you will have boxes to tick and nothing more and the fewer people that pass in their view, the better because as much as that is denied official sources, that's what happens to a lot of applicants.

Now about charities. Of course a lot of help is needed by a lot of people and causes, and it has become a battlefield to get funding.  But what I don't like though are the street campaigners who will accost you and door to door campaigns. There's been the odd door to door collections of which we have given our last bit of change to in the past. Again most are for a worthy cause and I assume the more official campaigns are a good effective way to get sponsorship and donations. But I resent it for two big reasons. a) because it puts me on the spot and because of my own financial situation, I have to turn down or even try to avoid the campaigners and b) the percentage of the costs paid by the bigger charities to a PR company who set these street campaigns up.

I feel bad enough about not having the cash to put in the odd cap but there is such pressure nowadays to support this, that or the other most likely there is a greater need. Personally I'm becoming overwhelmed by it all and the feelings of guilt are there, no matter how understandable the reasons are for not being able to contribute cash.

So when a friendly tweet comes through to my hash tag telling me I have 30 minutes to start bidding on a charitable auction for a children's hospice, I blow as it is one request too many. I did send back a polite tweet explaining why but hated the reply, of  'don't worry it if you can't, I understand'  sent me over the edge.

Ok, normally I think I would have growled a bit and would have delete the tweet but felt it was asking me on an individual basis with eyes watching to see if I did join in. I have a policy now on for not holding back on *why* I cannot do certain things when acosted in the street and this is no different. When challenged why I won't sign up etc  - and yes this has happened - I will not just only explain why but will ask for a donation to 'the Hev fund' (I have 'Hev' as a nickname in some circles) too.

Now don't assume I cannot or do not want to support charities.  I support five, two with donations that I wish to continue with and the other three with my time, but I can do no more than that. And do not assume other brain tumour sufferers cannot or are not able to contribute, there is some marvellous work being done in the brain tumour community of which I try and help with if and when I can to raise awareness. Yes we are trying to raise cash ourselves but I hope none are guilty of accosting people in the street or telling them to join in an auction on twitter without at least being sensitive to the fact some cannot afford to make monitary contributions or give their time.  Or at least not to openly to ask it of an individual on a social media website.

As said before, I am more than willing to give what time, effort and what energy I have into volunteering and highlighting a cause or whatever.  But if you want me to donate cash right about now?  Please don't ask as a refusal often offends.