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.


Friday 27 September 2013

Algy's Demise - I Got Stoned and I Missed It...

It's been a few days since Dave and I returned to Penzance. And Boy! They were *not* joking about the side effects, which seemed to get worse a day after radiotherapy was completed.
Dave at the Crown next to the Royal Marsden Hospital

We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!


As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course  Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'.  That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.

Where I collapsed in Islington
I digress. Now, radiotherapy side effects. I was warned that fatigue and possible facial pain would occur as Algy is swelling a bit as the protons do their stuff through him and some surrounding areas. But almost immediately after stopping Dexamethasone - a steroid -  the vertigo is back with a vengeance! Also I still have a terrible craving for sweet food yet can't taste it well, my concentration has gone to pot and I feel spaced out all the time but at least the seizures haven't increased apart from the Islington incident. I find now I dare not leave the house on my own as I am definitely more wobbly on my feet, so need Dave or someone with me so I can grab their arm. That's always been a problem in narrow crowded areas but for a while, sadly, it will be a little worse.

The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)

Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.

I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.

Dave at the British Museum
With the above, the secret is I guess, is to get to know how you will be affected and be honest about it. Right now I'm ok while typing this but tomorrow it may be all doom and gloom. There will be swings and roundabouts but because I have been informed about this and have an idea what to expect, I think I will be able to manage this better and know when to seek help if it all gets a bit too much. I am also letting those around me know what could happen so they are prepared too as I already had a flare up over something a few weeks back which resulted in my ripping some family members a new one on Facebook! So now they know now for instance, to keep me in the picture about anything major going on. It was a misunderstanding for sure but also very poor communication on their part too which only got sorted after my Facebook outburst because someone saw my rants and realised trouble was afoot!

I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at madamcod@yahoo.co.uk. or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.

Right, more drugs needed! Laters!

Monday 23 September 2013

Algy's Demise - Goin' Home...

Now before you all fall about laughing, yes I am a fan of The Osmond Brothers and a song of theirs has been ringing in my head since I woke up with morning. The chorus especially!

"Goin' home, goin' home, goin' home,
I gotta make it, gonna make it all right.
Goin' home, goin' home, goin' home
If it takes the rest of my life........"


The lyrics sum up the journey so far very well. And it is only so far too as Algy and I will always be together. He might be fried but how effective that will be, no one will know for years yet and he can never be removed unless he decides to ignore six weeks of protons being fired through him, or take in a cousin (2% chance) in the next little while and try to occupy more space. If that happens, at the very least it will not be pleasant because the little bugger is quite close to the brain stem. 

We leave for Penzance tonight at 7pm but will spend the day quietly tidying up, having a last look about the Goldborne Road area where I have been residing these last few weeks, and I'll try not to think too much about the near wiping out of my credit card and overdraft that has occurred. It has been a blast here in London and treatment aside, I have had a great time with being lucky not to be so ill I couldn't get out and about. However, I wonder if the side effects had been worse whether it would have been as much fun?

So this is going to be one of those *huge* long 'Hollywood - overrun - at - the - Oscars - thank you' posts, because there are *so* many to thank, in groups, indiviuals and I *know* I'm gonna forget someone but please if you're not on the list, don't fret. I am *so* grateful to you for making what could have been a dreadful time actually go very well!

*Loud intro and drum roll*!

My grateful thanks to (in no particular order) -

My Darling Dave, My baby bro Trevor, Lowri, Bethan, Nathan, John, Tina, Margaret, Duncan, Anne, Duncan Jr, Peter. Mum & Dad.Anthony and Tricia, Gordon and Gladys
Margie and Robert Hall
Veronica Taylor and The New Freedom Project
Debbie Carter @DebbieCarter14
Sarah Tarmey @tarmeygal1
Claire Siliciano @Science_Fan
Gilly Henwood @Gillyh1
Margo Milne @MargoJMilne
Misa Buckley @MisaBuckely
Claire Bullimore @BrainTumourAunty
Eileen Bullimore @pillionqueeen
Alana Herd @MyMillionToOne  www.mymilliontoone.com
Ben Miller @ActualBenMiller
Philip Ardagh @PhilipArdagh
@DeathinParadise
Gary Carr @iamgarycarr
Elizabeth Bourgine @lizbourgine
Danny John-Jules @DannyJohnJules
Beth Allan @BethAllen
Cappie @Cappiehead
Jo DeLapo @agitator76
Nathalie Martin @NanyLouloute
Sabine @Gracie_22
Steffi @St3ffi_K 
Hils @HilsP
Manuela @manuzanni
Jodie @sunshine_6972
@Whovian__
Kim Agaren @kikiagar
Michaela C @FiveFrogsBlog
Yasmina Sihel @YasminaSihel
Kaz Poole
Cafe Roma
The Crown - Marsden.
Jullie Liddle
Katrina Peirce
Chris and Jenny Smirthwaite
Pearl Ashton @pearlashton
Ann Coles at Hammer Out
Shane and Timothy Spall @pastafa
@HammerOutNews
All at The Royal Marsden, Fulham Road inc Katheryn and all on Lederman.
Mr James Patterson FRSC FRCN
Glad Baldrey RN BSc CNS Neuro-Oncology
Dr Jan Power, Dr Hugh Marshall Rosmellyn Surgery
Shirley Harris, Matron, West Cornwall Hospital
All at West Cornwall Hospital, Penzance
All at Derriford Hospital, Plymouth
All at Hammer Out Brain Tumours
All at Brainstrust
All at Meningioma UK
All at The Brain Tumour Charity
Shaun Skinner
Nick Phillips
Simon Reed @aramblingidiot
Mike Sagar-Fenton
Julian Greenwood-Penny
All at The Cornishman @The|Cornishman
Marilyn King
Jan O Malley
@TeamXander
@RichardOsmanFan
Cameron Yarde Jr. @CameronYardeJr
Alexander Armstrong @XanderArmdstrong
Alison and Dave Trace @aligubbs
Pamela Sutherland @Ltd_To_Two
Poor Old Bird @pooroldbird
S A Meade @kestrelrising
Jon Parker-Saville @FutureGuy75541
Lindsay Pickering and Peter Routley
Andre Haines and Gregory Watters
Rev. Julyan Drew @pronterjools
Chris Steadman @ChrisDSteadman
Susie Tait and the Monday Slimming World group.
Elizabeth Reknowden
Heather Anne Stewart-Gillis
Marla Kaye
Geraint Wyn Davies and Claire Lautier
Bea Quindlen
Susan Doss
Astrid Tanabet
Mary Strowger
Marg Yamanaka
Lee Kennedy
Chris Chell-Czerwinski
Maribel Veal
Gill and David Dodson
Jan Crocker
Roseanna and John Bray
Elizabeth and Eric Bray
The *entire* congregation of The Church of Jesus Christ of Latter-day Saints in Helston, Cornwall for all the cards, pressies, choccy *and* for feeding my C of E hubby Dave!
Wayne Brown @Eroica3
Christina Logan @LoganTinaLogan
Emma @Realsinginmouse
Sophie Hay @pompei79
Lesley Roberts
Marion Pitman
Kerry Endecotte
Dale Who
Sarah Jane
Kathleen Ginieres
Dawn Fidler and Josh @JourneyJoshuas 
Stephen Rodda
Denise Raphael Hopkins
Sarah Clarke @AcSarahAC
Everyone involved at @ArmadaCon

And of course, the whole bleddy population of Penzance!

My time with Algy is far from over, as said before but one thing you can be sure of though. It doesn't matter if you can only send a tweet, wish, word, thought, etc. IT COUNTS! IT HELPS! *ALL* OF IT!! Never let anyone try and tell you otherwise. The fact someone cares enough to make even the smallest of gestures can mean so much. I have been and continue to be so very blessed and lucky during all of this, to be around those who have given me so much support and continue to do so, to encourage, bouy up and give a good kick in the pants when needed. But I am very heartbroken to say that there are those out there who have no one to lean on, who have been all but abandoned by their families and friends who cannot deal with the 'C' word, or the fact the person affeced cannot function as they used to. That happens a lot and it is shameful to say the least.  

For those out in the media, one word, one RT on twitter makes all the difference as well because people *will* and *do* take notice. And if that's just one other person who maybe curious to read further, or who might be finding themselves starting this journey or who are affected by it an any way who can be reached, then it's worth it.

So thank you to everyone from the bottom of my heart. The journey continues and so must I.

Love,

Hev XXXX





Thursday 19 September 2013

Algy's Demise - We're done with the CLINAC

Today has been a day of emotions, tears, laughter, impatience and grateful goodbyes. I have completed my course of radiotherapy at The Royal Marsden and just now have to wait out the side effects which so far is more fatigue, mood swings, post neuralgic pain and sensory changes down the right side of my face than anything else. There will be a follow up phone call with my Clinical Nurse Spcialist, Charlotte in about six weeks but I can contact her sooner if needs be. Letters will be sent to my GP in Penzance and there'll be a follow up MRI scan to be done at The Royal Marsden on 11th December, then yearly after that to check on Algy's progress. Plus I maybe monitored for potential consequences from the radiation itself such as a 2 percent chance of developing a maignacy over 10 years, or problems with my pituitory gland as it is in the path of the radiation.

So that's the medical/physical stuff.

Bang. Done. Dusted...

Yet I'm sat here with a *crazy* dose of the munchies and am feeling quite agitated. As per my last post, this is an emotional journey more than a physical one and I am going to be spending an awful lot of time trying to figure out where to go next with this and what it will mean in the long run.

Certainly, one cannot possibly go through an experience like this and *not* be changed in some way or another, but whether that change is permanent or we then slide back into old routines, attitudes and habits will depend on the individual. We're all different with how we react and deal with life changing moments as we grow and slide along life's often poorly greased and uneven path.

Algy to me has been a bit of a wake up call and a gentle reminder about the fragile state of our own mortality. Now ok, not once has Algy been immediately life threatening but there's always that risk he can become so and of course, anything growing in the confined space of the skull and spine is not a good thing, no matter how slow growing or innocuous it might appear. Tissue becomes compressed and damaged, often perminantely so and sometimes with fatal consequences.

Then of course there's all the other stuff, the social, medical, personal, financial, employment, welfare, self image, relationships, the whole shebang that still hasn't completed it's way through my addled head yet. The impacts of all the above, the potential consequences, the limitations, and maybe the opportunities, I don't know. Each time I blog, I realise that there is so much that has yet to be digested about all of this, so much to be understood in terms of change. An exploration in to an individual 'Undiscovered Country' if you will.

Many wax lyrical I guess about the meaning of life especially with events like this, the closest of which that makes any sense to me would be a la 'Monty Python', as well as my own personal and spiritual leanings - and it seems similar in the fact the Big Eight are involved; birth, growth, masturbation, sex, taxes, relationship/divorce, old age and death - yet for all the commonality of these life events, they can mean so many different things to so many people.

And the same applies to those going through any huge life change, no matter what. With me it's about finding another place to be in terms of usefulness and the future, to someone else it's about relationships and so on.

How's about cultural and social expectations? The cultural expectation of 'having courage' that when before it could have been a compliment to me, now becomes something more patronising, along with ' stay positive and not worrying about the small stuff'. You only have to read my last entry or two here to know my opinions on that! But then someone else will have a different take and I would love to know what others feel about those sentements both as givers and recievers.

It actually was suggested I write a book about my exeriences with Algy by someone who works with one of the charities I (try to) support and I think I would like to give that a go. But putting together a book is vastly different to scrawling in to a blog. My book would (I hope) be informative, humourous, emotional, factual, honest, knowledgeable but not just about me but also others on a similar journey. I would want to have little cartoons of my relationship with Algy, accounts from those who are affected by their condition or someone's expereinces with those they know who are affected by a brain tumour. I want not just a jolly praiseworthy account of a community being brought together to fund raise but also what a pain in the backside it can be to live with someone affected, and also touch on those very difficult questions that have to be faced sometimes when it doesn't go right.

So here's the thing. A call out to those affected in anyway by a brain tumour, whether as a patient, friend, carer, professional, family member, fund raiser, community worker, lover, you name it. I want to write that book and I want to write a book that reflects *our* own personal journeys. Ok, loads are out there in blogs, self help books, text books, professional work, papers and what have you, but I don't often see much from those with brain tumours themselves outside of what you might read in forums and groups. Some are very private and personal stories, a lot of course carry pain, for example the differences say between paediatric (childhood) brain tumours and adult ones, having as a parent/adult to make a choice about treatment that could result in long term damage but which also could give a child a fighting chance to live?

There's also room for humour as well as drama, and yes, I would like to have inserts with 'brain facts' and so build up a picture with my story as part of it, although in a way it'll be a central to a type of written 'Venn Diagram' to which I hope, an honest but empowering account of what being affected by a brain tumour is all about.

So how's about it chaps? Are we in.....?



Meet Jonathan Pope-Mask, my Thermoplastic Gimp Companion..!



Not necessarily my view but some might find meaning with the words below ;-)

The Galaxy Song - Monty Python's Meaning of Life 1983
By and copywright to Eric Idle and John Du Prez.
  
(spoken)
Whenever life gets you down, Mrs. Brown, 
And things seem hard or tough, 
And people are stupid, obnoxious or daft, 
(sung) 
And you feel that you've had quite eno-o-o-o-o-ough, 
 
Just remember that you're standing on a planet that's evolving 
And revolving at 900 miles an hour. 
It's orbiting at 19 miles a second, so it's reckoned, 
The sun that is the source of all our power. 
Now the sun, and you and me, and all the stars that we can see, 
Are moving at a million miles a day, 
In the outer spiral arm, at 40,000 miles an hour, 
Of a galaxy we call the Milky Way. 
 
Our galaxy itself contains a hundred billion stars; 
It's a hundred thousand light-years side to side; 
It bulges in the middle sixteen thousand light-years thick, 
But out by us it's just three thousand light-years wide. 
We're thirty thousand light-years from Galactic Central Point, 
We go 'round every two hundred million years; 
And our galaxy itself is one of millions of billions 
In this amazing and expanding universe. 
 
(waltz) 
 
Our universe itself keeps on expanding and expanding, 
In all of the directions it can whiz; 
As fast as it can go, at the speed of light, you know, 
Twelve million miles a minute and that's the fastest speed there is. 
So remember, when you're feeling very small and insecure, 
How amazingly unlikely is your birth; 
And pray that there's intelligent life somewhere out in space, 
'Cause there's bugger all down here on Earth! 












Friday 13 September 2013

Algy's Demise - A Painful Epiphany

I've only got three more 'bolts' or doses of radiation to go before I finish next Wednesday (18th Sept) and will be glad to get back to Penzance the week after. But how has this part of my journey gone?

One thing I will be forever grateful for is that I haven't felt really any worse throughout my stay in London. Indeed, I have made the most of my stay with the anticipation I would get worse as time goes on. But so far, no seizures, no hair loss or burns to my scalp. In the last week though, I have started to get more fatigue, more dizziness and disorientation plus much to my chagrin, a damn sight more moody with hot flushes. But that could happen anyway. Goodness knows I'm at the right age and have been peri-menopausal for ages!

What is certain from infomation I have been given, it will be years, possibly up to a decate to see if/how well the radiation has worked, whether Algy will be stopped in his tracks and maybe even shrink. Apparently 50% of tumours (I presume it is the non malignant meningiomas) do shrink after a while but this again may not be visible for a long time.

My journey with Algy still has a long way to go and will be a lifetime one. But from what I have experienced so far is not all negative. There has been a growth of another sort, but I'm not sure what that is yet in terms of personality etc. Certainly one thing I would *love* to do is get some form of a life back in terms of maybe improving skills, the arts, I don't know. I am realistic enough to know it is *highly* unlikely I will ever be considered for paid employment as I have to be realistic about whether I could sustain a job, to be able to give it the time and energy that is needed, whether an employer would risk that. But then, there's not much in Penzance in terms of employment for the young and the fit, never mind a knackered 52 year old ex-nurse with chronic health problems. Any ideas folks on what I can do to while away the hours? I do like showbiz ;-)

So that'll be the next road I suppose, to figure out what I can do for the rest of my life however long that will be. I would love to write for a living, but everyone would and my writing style isn't that fabulous! I would love to work maybe in the media but being a roving reporter would be out. Being 5 foot, overweight, grey hair and if not for the wonderful existence of lady blade razors, would a moustache and beard thicker than Dave's! Maybe local radio? But I speak too fast, have too much of an accent and would spend most of the time talking gibberish.

However, that idea not completely impossible. I was recently interviewed by two wonderful ladies called Eileen and Claire Bullimore for a radio show they host on Thursdays via the internet community radio station Croydon Radio. The first part can be listened to here Brain Tumour Thursday Radio Show interview pt 1 and the second part here Brain Tumour Thursday Radio Show interview pt 2 .Claire is a brain tumour survivor, who like me had a 'benign' meningioma that she had diagnosed after her optician picked up signs on examination, even though she too suffered headaches for years! For this, Claire had surgery which has left her with cognitive and memory difficulties, as well as the usual fatigue, but for all of that, she is a vibrant, lovely young lass who has a great love for Hazelnut Latte!

Claire spent her working life in PR and did try to get back to work after her operation and recovery but could not sustain her ability to do so because of her fatigue and other problems that she had been left with. But rather than do nothing, she along with her lovely mum Eileen, who is a fabulous support (and Claire's carer) the two have become a tour de force for a positive, uplifting attitude towards brain tumours. The proggy is two hours long with great chat, info, guests and music. There's also a 'shoutbox' on the website you can leave messages during the program as well as tweeting via the hash tag #braintumorthursday or via @braintumouraunty. Give it a listen, well worth it. If you can;t catch it when it's on, between 12 - 2pm Thursdays, it's available for podcast the day after and can be found via the Radio Croydon website. So new beginnings can and do happen.

However something happened to me in the last couple of days which has left me feeling cold. I've had another wobble over the last 48 hours down mainly to mis communication and the growing realisation that Ye Olde Midlife Crisis is hitting as well.

To explain. Very sadly, David's uncle died recently in Scotland and plans were made for his ashes to be scattered in Cornwall. No one expected to do this until the new year but all of a sudden Dave's parents got a phone call to say his uncle's wife, daughter and boyfriend were down and the ashes were to be scattered the next day at Prussia Cove. With the flurry of getting there and all of a sudden a post committal dinner, someone forgot to let me know. I in turn had been trying to get a hold of Dave as I was having a rotten day with pain and depression setting in from fatigue. When I did get through I got a 'can't talk now, been scattering Uncle David's ashes and am at a dinner' or somesuch.

Not only did that come as a bit of a shock, I felt I had intruded on something and felt embarrassed. Then I remembered I AM FAMILY! SO WHY WASN'T I TOLD!

In true fashion, I blew my top big time and began to panic as it hit me, if my own husband could be so apparently dismissive of my feelings and need to know, what the hell was I going back home to and started to panic even more.

Now some of you will say maybe no one said anything because they wanted to protect my feelings or what have you. It's nothing of the sort but an actual family curse of poor communication, of when information needs to be given etc. There was an assumption that information had been passed and also a lack of urgency to do that. I also began to feel I had been left out of the loop because well, I'm just not there. That and a world of frustration, pain, disappointment that has built up over many years - for example and I know this is nit picking, my nursing colleagues never even sent a goodbye card when I had to leave on March 2011. The small medical records office where I had been secomded to for the remainder of my employment were kind enough to give a little gift & wished me well. But it still hurts for some reason.

I also started to think of the times in my life I have been excluded or pushed aside, or haven't been confident enough to say 'Oy!', when I have been basically and patronisingly told in various ways I am not 'quite good enough'. A lot of childish resentments came up and I BLEW. Sadly for Dave, he and his family got reamed across Facebook because I had had enough and again I couldn't get a hold of him. And again I panicked. Is this what I want for the rest of my life? Do I just go along with this and accept it? Is is all that I am and mean to those around me? Why was I getting more connection, passion, interest, bigger world view, information, self worth and support from the internet? Why could I not get that from those around me without having to almost beg for it at times? Is my perchance for having a big mouth just a means for getting attention for myself rather than promoting a cause and spreading awareness? What the hell is so wrong with having a big mouth and getting some attention anyway?

Did I really want to go back to this? Is is fair on Dave to be lumbered with an overweight, temperamental old boot who can now grow a beard thicker than his if I let it happen? Why was I never cool enough, clever enough, pretty enough, assertive enough, brave enough? I have been well blessed in life but there has always been a lack of emotional fulfilment along the way I have passively accepted because plain looking girls and women have no right to expect such demands.

To do and be otherwise is vain - which is why Janice Ian's 'At 17' sums up so well how I felt at that age and rightly or wrongly still do now. That was the gender expectation of my Mother's generation which sadly has filtered down to me. In one very horrible blast of clarity I saw that my remaining years would possibly slide into something terribly...empty, too sedate, too dull, redundant and useless. I am and have become another slightly wornout footstool in the furnishings of life both to myself and those around me. I had been hit by the Huge Self Pity Bug of course but dammit I *WANT* flowers, chocs, diamonds, sapphires, romantic walks, adoration and praise! I want LIMELIGHT! For the famous and fatuous to call me Dahlink in their midsts! To be invited to parties and dinners again! I want.... and so on! I'm revisiting my adolescence except this time it's called the menopause which is as bad, if not worse as it includes 'memory loss of the recent events' sort. And I am older and one hell of a lot more cranky too boot!

I know this is getting away from brain tumours but actually it is very relevant. Again when faced with a life changing/threatening/endings, the physical bits sometimes are not as painful as the emotional ones. All the way through this blog my feelings and 'whinges' come up frequently. At first I felt embarrassed when I read back through to re edit this blog and some of it wasn't relevant, but a lot is. Serious illness/injury/life change will throw up a whole bunch of deeply buried feelings/thoughts/memories that have to be faced as well. Some 'categories' would be

Hurt
Unresolved issues
Embarrassment
Lonliness
Umbrage (I kid you not!)
Loss of self worth
Anger
Sadness
Reality Checks
Panic
Accepting life changing events
Having to put all the above and so much more in to context.
Fear, shame and resentment of past, present, future.
Loss of ideal image of relationhips/lifestyle.
Vulnerability.
Loss of respect from self/others, 'persona non gratis', 'pity party'.
Facing a new, scarier and often more hostile world.
Facing changes within yourself.
The Future!

It's not just having the tumour and phyisical symptoms & signs. It's everything else as well. But getting and keeping a realistic insight is also painful because for all I might complain about how I been treated in the past, I also have a lot I need to appologise for as well. The term 'Old Sins Cast Long Shadows' is something I heard on my favourite BBC Comedy drama 'Death in Paradise' from an episode where a Roman Catholic priest was lamenting his past. And the saying is true. Karma, the past etc can and does come back to bite you on the ass and I am often left feeling cold with shame at my blatant stupidity and downright bad behaviour both past and present.

I am also having to relearn what the word 'confidence' means and not feel guilty for being more demanding and bolshy but also need to temper those feelings, strike a balance. I want my remaining life to be filled with love, laughter, passion, bright lights, the warm glow of my hearth, going for quiet walks with Dave that won't be broken by yet another phone call for him to go fix something and he is not confident enough to say no. I want us to become lovers again in the true sense of the word, in feeling if not in action. Dave is very affectionate but he finds it hard too. He has battled with a speech impediment and mental health issues all his life, that I have only recently realised had forced him to have to do a 'Spock' and reign in his emotions, so he wouldn't cry every time he's been taunted. Like me he tends to say 'yes' as he would feel guilty in saying 'no' as much as it is to help someone in need and is open to being used by those who otherwise wouldn't pay him a second glance and rarely pay him for his time.  He is a very bright, practical man who has had to work hard at getting the confidence to develop his own skills and identity.

You should see him planning, designing, cutting and machining a model engine that works on electric, compressed air, and steam should we be able to afford a large enough boiler. All these skills are being lost now as machining is no longer taught in out schools. Dave has taught himself these skills but of course, it helps he comes from engineering stock but they are rare, prescious and require concentration, intelligence.  He is a very quiet man as said before, but *very* sharp and I am ashamed at how often I too have underestimated my husband. Dave's family are fabulously eccentric, subversive and fun doing much to help their youngest son get though his life.

On my end, I am chatty (too much), an openly proud nerd/geek/anorak because that world is where I was welcomed for who I am, even though quite often in my life I didn't and still don't know what that fully means at times. I do crave acceptance and the need to know when I have done thinks right yet it's taken me the best part of thirty years to be able to accept a compliment at face value. I have always been well fed, clothed, safe, warm and with a roof over my head.  But for all that, it has been lonely and scary. Dave and I both have this in common from different angles of course. My brother is the 'carrier of the gene pool' on my side and has a wonderful family of his own who are confident, outgoing, bright, energetic and loved whereas I have declined parenthood as I really do fear contaiminating the next generation with my baggage and have been told in the past this was a wise thing to do. Children are too precious to me to inflict my personality upon.

Where all this rambling is going, I don't know. There is a point in there somewhere and it *is* part of your experience and recovery. Life itself may not change but certainly your take on it will do. Aging and experience does that as it should, but at 2am on a wet Thursday morning my take on life shifted a little with the painful epiphany that I had not made the best of it by requiring something different from both myself and those around me...

..And also the fact I have been lucky enough to be given a second chance and I do not want to waste that opportunity. Ever.