Algy's Demise - The Journey Begins...

Ok folks, it's crunch time!!!!  The journey to Algy getting his comeuppance has started! Over the next few weeks, I hope to document my radiotherapy, what's involved and the effects of being away from home as the treatment will be taking place in the radiotherapy department of the Royal Marsden Hospital, Chelsea. I hope it will be informative and helpful but also I will warn you, will probably be emotional in parts as well.

22nd July 2013 (Btw at 4.24pm while I was being scanned, someone had given birth to a future king at a hospital in Paddington!)

Today, I had my radiotherapy planning scans, to accurately locate Algy and have a mask fitted which will bw worn each time I have a dose of protons fired from a linear accelerator in to the heart of the Algy Death Star! 

Heading into The Royal Marsden Hospital on the Fulham Road in Chelsea.

It was hard work getting to the hospital from my friend’s place in Ladbroke Grove to Onslow Square next to that part of Fulham Road where the Royal Marsden is located.  One had to take the 28 from Westbourne Park Tube to Kensington High Street Tube, cross over and get the 49 out towards Hyde Park corner and get off at Onslow Park. Except no one told me *which* 49 I had to get! I had climbed aboard the Hyde Park bus, eralised it was not going where it was supposed to go and ended up walking quite a distance from the Royal Albert Hall to South Kensington Tube. I realised it was the 49 with *CLAPHAM* on the front I was supposed to catch! Never mind, I got there in one piece and splurged on a ‘Pret-a- Manger’ lunch.  At least I could get my bearings here and made my way to the hospital for blood tests. 

Now the Royal Marsden is a world renowned hospital for the treatment of cancers and that also includes brain tumours, including my type of ‘benign’ tumour that can still be fatal, even if low grade.

I arrived at 1.45 pm for some blood to be taken to check my kidneys were up to having a contrast shoved through them.  I had to wait a short while as one has to take a ticket and wait for that numb to be called, which I think is a good idea.  My blood forms were there and I also consented to a trainee phlebotomist to have a go. She was a Registered Nurse who was specialising in this. The training at the RM for venepuncture is a little different as the staff there have to try to preserve fragile veins that have been subjected to chemotherapy. For general info if you speak medical or curious about sticking needles in to veins for medical reasons, here's a link to the University of Glasgow training pack for medical students http://www.gla.ac.uk/media/media_109800_en.pdf

After this I went off for a walk and bought a nice bracelet made from Swarovski crystal that has two small sparkly skulls from the local Butler & Wilson shop nearby. Ok a bit creepy but this is both symbolic of my ‘head’ journey and the potential demise of Algy to a non-growing lump, as well of course being a 'Pirate from Penzance' ;-)

A somewhat creepy but appropriate symbol for me.

I returned at 3.15pm to go through the mask fitting process and the two scans needed to check everything was in place and to plan my radiotherapy treatment. It took some time to find the correct registration desk and get checked in.  While I was in the queue, the department called me on my mobile phone saying they were waiting for me! My terse reply of “I’m in reception trying to get booked in” had them hang up quickly and it wasn’t too long before one of the department nurses found me, proceeded to check my details and people, they do this on an electronic pad which the nurse told me took longer than actually ticking paper! Then I was eventually sent to the ‘Gamma Knife’ dept to complete the mask fitting.

I was a bit flustered by this point, as time was marching on and I was anxious about the possibility of missing one of the scans.  They were doing all of them at once that day to save me having to come up from Penzance three times  to get this done, but it did cause some confusion.  Sadly for me, I was hoping to have 1 or 2 pix taken of the mask fitting while it was being done, but the Royal Marsden no longer allows pictures to be taken of any process now, I asked why but the nurse specialist shrugged his shoulders, he didn’t know either.  So any images in this blog will be fished from the ‘net plus any I *might* be able to smuggle out!

The mask fitting process is a bit weird, not painful but for those who suffer from claustrophobia, it can be a bit confining.  The mask is often referred to a thermoplastic radiotherapy mask of which mine is made from a Perspex type material.  This type of mask comes in many sizes and shapes depending on which part of the body is going to be irradiated. 

More about the mask fitting here http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx#DynamicJumpMenuManager_6_Anchor_1

It's a flat sheet is first soaked for a few minutes in hot water and this one was applied over my face. There is a small hole that is stretched to open exposing my nostrils and mouth.  I lay on a bench and my head was placed in a frame so I couldn’t move and the mask placed and moulded over my face. While the mask was setting on my face (It hardens and shrinks a little bit so be prepared for that) some Michael Buble was played to help me relax. the RM has quite a selection of music!

Yep, Jonathan Pope it is then, but my blue mask is better fitting!

It was quite a sensation as the two technicians gently pressed and marked around the areas where the radiation would be targeted.  Also in my case, marker ‘bobbles’ similar to those used on suits for CGI effects are placed to aid targeting as my head will come up as a CGI on a computer.  To that end, I have decided to name my mask ‘Jonathan Pope’ after Ben Miller’s character from ‘Moving Wallpaper’ where he has to wear a CGI body suit with hilarious results.

After this it was time to shoot back up to the CT Scanner department and have the mask placed over my face for as scan to check it’s in the right place for the zapping.  The machine they had was a GE Lightspeed Scanner and the Techie bits I’ll post as a pdf somewhere for you to look at, but essentially it’s not just to locate Algy but to also start building up a 2 – 3D image of him. Again I lay on the table and my head rested into a frame where the mask was secured when placed over my face.

The GE Lighspeed CT Scanner

The procedure isn’t painful but the mask is very close fitting and because I was a bit sweaty, I wriggled my face a bit to get comfortable so my skin would stop pulling. Apart from that it wasn’t bad.  When you lie on the table again, your head is placed in a frame to which the mask is attached, and to make you more comfortable your legs are usually supported by a shaped pillow.  The scan itself takes about 10-15 minutes.  The staff guides you through the process and usually you are given a call bell if you need attention.

After this is was then back down to the basement to the radiology department where the MRI scanning rooms are. I was met by a nice young technician, who checked I had no metal including any in clothing. 

From previous MRI scans I have learned to avoid wearing anything with any metal bits, so usually only have to remove my bra otherwise it’s the dreaded hospital gown with the non fitting back that is ‘De Rigeur’ for hospitals.  Also the staff go through a check list with you about any metal in the body, to check whether you have undergone any recent surgery or have stents in etc. Remember, MRI stands for ‘Magnetic Resonating Imagery’ so one does not want one’s metal dentures and watch suddenly flying off and hitting the chamber wall!

I has brought a couple of buds along for the trip! Well random! Isn't it! Isn't it Though! Please note the dressings on both arms, it does *not* mean I have become an IV drug abuser!

MRI’s by any accounts can be noisy and claustrophobic as your body is passed in to a narrow chamber inside the machine and they can be loud too.  The ones in Truro and Derriford are literally old clunkers, not only with the buzzing of the scanner but also the loud rattle of the magnet spinning around as well! It can take up to 45 minutes depending on what is being scanned and as to whether a scan with a contrast dye is needed. I was given ear plugs to mute the sound of the scanner and also most departments will offer headphones with piped music from their radio or CD collection, or you can take in tour own CD. Mind you, the volume is never loud enough to drown out the scanner!

The contrast dye is made up of something called Gadolinium (Doratem®), a material which is visible to magnetic scanners. This is needed to pick up various tissues which may not be visible under a routine scan which shows up Algy quite well and is given intravenously. It was for this I had my bloods checked earlier to ensure my kidneys would be up to excreting this over the next couple of days as it remains in the body for about 24 hours. After waiting for a while so that the gadolinium had time to circulate around my body. Here's a wiki on the stuff for those who speak chemical as well as medical. http://en.wikipedia.org/wiki/Gadolinium and and general info on medical usage  http://www.ajnr.org/content/31/6/981.full

The MRI scan is used for diagnosis, clinical observation and in this case, again as part of my treatment planning.  I was quite surprised at how quiet the machine at the RM was – a Siemens Magnatom Aere – which is quite new and takes a better computerised image.

The Siemens Magnetom-Aera MRI scanner.

More about the machine can be found here http://www.healthcare.siemens.com/magnetic-resonance-imaging/0-35-to-1-5t-mri-scanner/magnetom-aera

The scan took about fifteen minutes as only the contrast scan would be needed. When it was done, I was taken back to my changing room and given some time to recover my wits! After this I left, took some pix of the exterior of the hospital and headed back to the South Kensington tube station area where I had a salmon teriaki for £5.65 at a place called Wasabi and it was bloody delicious! The only downside, I was approached by a bloke trying to sell me a battered magazine and asking for money so he could eat, yet he was smoking a ciggie from a packet that cost more than I paid for my meal. My 'no' was met with his calling me a twat.

The journey back to Ladbroke Grove was no less truamatic as again I got on the right bus (The 28 from Kensington High Street - forgot to cross over the road!) but headed in the wrong direction and was almost at Wandsworth before I realised that for the second time that day, I was heading off in the wrong direction so had to change buses again! Plus it being the hottest day of the year, I was pretty shattered when I got back to my digs and to cap that, O2 mobile dongles to NOT get good signals in Ladbroke Grove and spent a frustrating evening trying to use the internet on something that was slower than a tax refund!

I am back in Penzance now but have to prepare for the fact I'll be away from home for six weeks which will kill me, but it's gotta be done. Will add more when the shooting match actually starts! Watch this space!

Low Down on My Consultation at the Royal Marsden on the 10th July 2013.

Six weeks in London! He'll have to clean up after the cats while I'm away!

Ok, here's the low down from my consultation at the Royal Marsden yesterday. Be prepared to get your anatomy and physiology text books out!

The bods at the RM wanted to check that I was happy to come up to London for treatment, which I wanted to do anyway, even if it meant camping out because they are *the* No. 1 cancer specialist hospital in the UK and right up there in world rankings. Plus because I have a friend who lives in Ladbrook Grove and who is letting me crash at her pad during treatment. This will save me the two hundred mile round trip I would otherwise have to undertake daily from Penzance to Plymouth in the winter!

Right, now the medical bits which I will do my best to translate in to English!

My tumour is quite close to some sensitive areas of the brain, such as the 'optic chiasma' where the optic nerves meet and then go to the eyes, and also quite close to some major blood vessels, including some biggies such as the Basilar ateries and veins, is growing under the temporal lobe and against the Pons (Science 101, Biology - look those up!). Also against the trigeminal nerve on the right side of my face where I right now I have a constant tender spot on the top of my head, some loss of sensation around the lower right cheek, right nostril, mouth and this does flare up where I lose sensation all down the right side of my face or get quite painful pricking, although this can be another form of a seizure.

It is possibly a major cause of why I still get protracted vertigo - although not actually rubbing against the vestibular nerve which is where the sense of balance is transmitted from the middle ear to the brain, but the increased pressure can effect it enough that the cells where the electrical impulses pass can be affected upsetting the 'circuit' so to speak and this can be permanent.

The biggest problem is Algy is also quite close to the brain stem, and that is an area you *don't* want to mess with for the following reasons.

Because of this, the 'short' treatment of 8 bursts would be too risky as the level of radiation would be higher and could affect those areas of the brain as well as Algy himself. So the only real option is to go for the full 30 bursts where smaller dose of radiation can be applied a bit of a time, so reduce the risk of irradiating those other areas too.

There will be side effects of course and long term medical problems that can result. The main one being that Algy will swell up for a while so my symptoms will become worse such as increased fatigue, plus could also include nausea and increased seizures. My hair will be affected and will get some bald patches plus 'sunburn' type areas on my scalp. Some of it may grow back or I could arrange my hair that the patches will could be hidden, however if they are too numerous, personally I'll be adopting the 'Sinead O'Connor' or 'Gi Jane' look instead. I've done 'bald' before or will have a close crop as I don't want any 'comb over' looks which to me is worse! Also there might be some cognitive deficits but as I get those one way or another, I doubt if anyone will notice! ;-)

Long term, there are increased risks of having a stroke, it could effect the pituitary gland and I will have to be checked annually for that and my vision. I already have retinal photos done with my optician so any changes can be picked up. Also I have discovered if in photos you see anyone with a 'white eye' instead of a 'red eye' effect from flash photography, that could be a sign that something 'orrible could be going on as it affects the retinas! So will have to be monitored for all the above for at least a decade or so. There also maybe sudden episodes of severe fatigue which can occur.

It will take around four years or longer to see whether Algy has stopped growing, which is the main intent of treatment, and about 50% of tumours shrink, but it could be 10 - 20 years before this is evident! So will be having annual MRI's for the next few years or so at least. Of course there is a risk algy could grow back and a 2% risk over 10 years that I could develop a malignant brain tumour. 

I will be fitted with a mask rather than having a cage bolted to my head, which I am rather pleased about although it will mean having to have a mold taken of the upper half of my body, from which a mask will be made up, and will be used to secure my head and shouders so I can't move during the procedure and risk the bolts hitting the wrong part of the brain.

I won't glow in the dark nor will I turn green and rip my shirt off! That's it in a nutshell m'dears.

Poor Dave wanting to go to the pub! Waiting for the Consultant.

The actual dates hopefully will be soon but I'll find out in the next few days.

Ben Miller is right about Pavements!!! Trying to negotiate Oxford Street with a stick.

Ben Miller is right! Pavements should have traffic lanes...!

On an episode of the comedy series ‘Room 101’ hosted by comedian Frank Skinner, Ben Miller stated one of his pet hates was the disorganised way pedestrians walked down streets, suddenly stopping without warning, obstructing, colliding and slowing everyone up in general with no idea of the effect this has on other pavement users. That there should be some form of pavement traffic lane system similar to those on roads in order to ease congestion.

Ben Miller on 'Room 101'. Copyright Hat Trick Productions/BBC

 I have to agree!

Over the last three years now, I have used a walking sick so that A) I know where the ground is and B) to remind me to stay upright. It is my perception of where everything is in time and space with the constant fear of falling that is the cause of the problem I have with my mobility, as I get frequent episodes of vertigo. This causes me to stagger, become very disorientated and could bring on a seizure on my worst days.

In Penzance, I am usually ok with mobility as I know where every stone, every crack in the pavement, every turn, step, corner, pavement edge, cobbled bits are, slippery smooth flagstone, the works. I have lived here pretty much full time since 1984 so know it very well.  

But even then, there are times of the day that I dare not venture forth unless absolutely necessary because I cannot cope with masses of people coming at me all at the same time.  I have to plan ahead where my feet are going and this is exhausting, as you have to consciously and constantly think ahead to where you want to be, how to get there and I have to do this where ever I travel to.

For example in London usually I can manage quite well now on my own if travelling around there during the day providing I take care on the underground, and again plan ahead with allowing plenty of time for travel.  But in some areas, no way can I do this with a margin of safety and still need a companion at the busiest times, because even in this more friendly towards the disabled cities, one can still get caught out. The worse example I can think of is Oxford Street, one Monday evening back in October 2012. 

I had travelled up to see Ben Miller at a gig he was taking part in at the 100 Club on Oxford Street, at a do called ‘Karaoke Circus’. I would have been up there with my husband celebrating our 21^st wedding anniversary that week, and was going to stay at a friend’s digs in Ladbroke Grove, but she had taken ill and so our plans were scuppered.  However, I did want to meet up with some friends for a ‘got-married-21-years-beforehand-but-never-had-a-hen-night' do, so this was to be some compensation for that but Dave stayed home, ever the wise man!

I had arrived on time in Paddington and was met by a lovely lady called Emma, who is by anyone standards *very* tall, especially if you’re only five feet in height as I am.  She had kindly offered to help guide me towards the venue and we set off to meet up with two other fine ladies before heading to the club. It was about 4.30pm, dark, drizzly and not the nicest place to be and also it was ‘rush hour’ or seemed to be by the number of people whizzing past, who kept colliding in to us.

What amazes me is that as said before, Emma is very tall and I am very wide, albeit 3 stone lighter now than I was back then.  I had a hold of Emma’s arm so I wouldn’t topple if I became disorientated (which was constantly that evening!) so you couldn’t say we were not visible.  Of course, as one does, we stayed to one side of the pavement so as not to hamper those passing by.

But still people kept walking/running/crashing in to us. After a while this got very annoying and had also started to make me feel quite ill because again of the constant stress of trying to avoid colliding with those coming at us.  After a while I got really fed up of this so told Emma I was going to start swinging my stick from side to side to clear a path, and I think this embarrassed her as it seemed I was trying to make out I was blind but I getting angry for both our sakes, as well as sore from the collisions. 

It turns out that this was a very effective method of at least clearing a little space ahead so we could crawl along without too much damage to ourselves, but I can’t say the same about those who collided with us as some received (deservedly so in my opinion) quite a crack on ankles and knees from my swinging stick. One lady jumped when on the receiving end of my ire and at least apologised, which was nice.  I hope that she at least slowed down a little afterwards to think about what had happened.

We eventually met up with the others and made it to the 100 Club, struggled down the stairs (by now I hope they have had that lift the doorman said I was a week too early for!) and had a good evening entertained by those ‘karaoke-ing’ to a live band and orchestra! Ben Miller, who was joined by Danny John-Jules, did a superb comedy duet of the George Michael and Michael Jackson song ‘Say, Say, Say.’  After which I went back to my hotel (via a taxi share this time) in Paddington and proceeded to have a mini breakdown, but that’s another tale which I won’t repeat here.

Assaulting speeding pedestrians on a busy London street with a walking stick might make for an amusing tale but actually raises some very serious points. As said before, London is usually fairly disabled and mobility impaired friendly (although as I found out with The 100 Club itself, it is best to check with any venue beforehand about access)  but not it seems on dark October evenings!

What if I had been on my own? What if I had been a wheelchair user? Or indeed blind or handicapped in any other way? It’s a very frightening experience having a wall of people coming at you and having to figure out a way of getting through that wall without falling or holding them up.  It is an embarrassing, soul-destroying, esteem-damaging and marginalising experience to have become an invisible annoyance to those lacking the insight or care about others who have difficulties. 

I am not trying to claim a greater right of way on the street than anyone else but given the fact although Emma and I were considerate of other pedestrians because of my impairment, it was to no avail in terms of ease and certainly I will have no problem in swinging my stick again in the future if needs be!

So the message here is – If I am considerate enough to not try and hold you up by getting out of your way, do the same for me or else you will feel the bite of my stick!

So in to Room 101, the unregulated pedestrians and pavements go!

Of Relationships and Death.. but I ain't Kübler-Ross

This past week saw a sad event in my family with the death of one of my uncles in Ireland. Sadly, I can't go over there as it is too far and I lack the means to pay for it right now.

But it got me to thinking about family and friend relationships, how death and certainly the prospect of it can have such an effect on those relationships either in changing them or making one realise on what those relationships are based on.

Certainly, bereavement in any language and culture is an intense emotive thing expressed as much from the point of shocked numbness to out and out screaming hysterics. Cultural and religious rituals vary but most include acknowledging the event, letting go of the deceased and mourning their passing. Some will encourage the celebration of that person's life too. But all usually have an element of acknowledging loss and sorrow.

In the brain tumour community, death means many things, from the loss of the assumption we are all of good health, loss of independence, loss of work, loss of identity, loss of innocence in a way, up to and including coping with the death of a dear one from the disease. In my case it was the loss of a career, loss of being productive, and some financial security and independence. The potential loss of life isn't yet an issue with me as my tumour is non-malignant ( I *totally* refuse to call it 'benign' now as it's effects have been anything but!) and so far slow growing, but that can change quickly and still has the potential to cause a massive amount of damage.

For some it will be about having to face the severe limitations on their life span, with all the distress that goes with it. This is where extended relationships and understanding are so important. But what if the patient doesn't want that closeness? What if family/friends can't cope with the prospect of it?

With Uncle Kevin's passing, it has not only reminded me of the distance both in miles and closeness between my family and myself, especially as I haven't physically seen my Irish relatives for a very long time now, but also the fact I have allowed myself to grow away from them. I live in Cornwall as most of you reading this will know, so the physical distance with the difficulties of travel is there. I cannot afford to fly, and train/car takes a long time. But rather than see that as a challenge to overcome, I have allowed it to isolate me further, yet I can get to New York or Toronto easy enough! But then these are major destinations that are far better served and easier than County Wexford from Penzance in terms of ease of travel and cost.

So the solution is right there for me, to make a better effort to see my family, to work on that so even if I can't make it to Ireland, I could get up to Wales more often to see my brother, plus he's only an hour or so from Hollyhead so will try to sort something there.

But what if family relationships are strained? What if there is a 'past' that has been buried? What happens when the patient goes from being the life and soul of a party to a disabled, painful reminder of our own mortality?

With death and funerals, like weddings, you can bet your bottom dollar that any cracks in a relationship will be made worse. The intensity of emotion and regret compounds the problem and throws up a myriad of old wounds. Sometimes an event like this can bring people closer together, but I find often that is only transitory as the need for comfort is more important at the time, rather than the opportunity for really healing the breaches and making a conscious effort to build on that.

Over the years, in my career I have seen many die (I hope none due to my nursing efforts!) and have witnessed usually a quiet dignified presence of family and friends around the deceased, but have also had to break up fights too. Large divided families with massive issues are probably the worst to deal with, especially when you have a mix of hurt, rivalry, jealousy and some socio-pathic need for attention.

Sadly the above does happen and quite often. Yes, most of it is down to grief and the inability to deal with such powerful emotions and feelings, a lot of that I can really understand and do. But some as I was to discover later while talking to a psychologist, can also be the start of a 'power struggle' within certain members of the family, as well as a method for attention seeking.

But with most passings (I use that term to include before death) while family and friends need support, they also are in turn are very caring to the deceased as well as each other. If some want to help give a little care, such as comb hair etc, I have never stopped them giving me a hand (within reason) with that because it's most likely that will be the last act of love they can give to the patient while they're still alive. One of the best lessons I learned was from a very wise health care assistant who said that the last care or occasion a family member or friend will have with the deceased, is how they will remember that person for the rest of their lives. And that is so true.

So what about those who become disabled and/or dying? What about how they are often treated by those around them?

I have been *very* lucky that I have had nothing but the best support, care and love from my family and community. Maybe it's because I have a big mouth and have been very open about 'Algy', not sure.  But certainly my community in Penzance have been very supportive and I have found that to be the case with others who have faced difficulties too.

So it utterly breaks my heart when I read on the forums, face book pages and on twitter the difficulties faced by those who have been for all intents and purposes abandoned by those around them, or feel that they have been anyway. That statement can be as much the patient's own perception rather than it being the actual case. But certainly there does come a point where one does have to face the journey alone, for all that they have many caring people around them. The journey in this case being finally and irrevocably facing the fact of their illness and what that means. And a lot of people cannot cope with that.

Of course, as with any change, again it can throw up the old wounds, issues and create new ones as people can and are changed by their experience. Plus the fact in the UK, depending on what your tradition is, we tend to avoid the topic of change, death and dying like the plague.

We know it's going to happen to us but we rarely acknowledge it aside from maybe resorting to cliché and generally not talking about it. We see death and destruction on the news almost daily and recoil in horror at the injustice of it all, but yet we're very bad at taking an honest look at ourselves and our own mortality in the UK. Death here belongs to older relatives, to some far off war or crises, so we can be outraged or say 'well they had a good innings' etc to be tidied away in those parameters.

The person who is disabled/dying often find themselves in a place where they are powerless, and the hardest part for them is that often those around them don't want to acknowledge that the patient *knows* they are dying and often feels guilty about it. It's a tough thing to talk about, to look at, to see in an honest way because by doing that we have to confront the inevitability along with the patient and because of that, there is nowhere to hide from it.

Their relationships change, and for a lot of brain tumour/cancer patients their last years can be filled with treatments, often painful, routines etc, their whole lives being defined and directed by their illness. Carers and loved ones are also overwhelmed by this and the roles of husband, wife, partner, parent, sibling, lover, friend etc are lost in a sea of trying to give support, with little or no time for the relationship that was there in the first place, also having to often deal with 'role reversal' where the cared for used to be the main bread winner etc. And sadly some end up avoiding the patient like the plague and often the patient doing the same by isolating themselves as they feel like a burden to those around them.

It's a subject I have never been afraid to talk about in the past with patients, as especially at 2 am when giving care, they are more likely to voice their fears and regrets, but then maybe that's my way of dealing with it too. By being open about it both as a past carer and now a patient, deep down inside I hope I can remain a fountain of wisdom to all around me but have to face the fact I will be and am actually quite scared of death, of the process of dying that I and those I love are going to have to go through. And also the fact as said before we have to at some point take that journey alone both as the person who is dying and those who are left. My 'openness' maybe based on the fact that by talking about it, it might stave off the pain, grief and isolation, by letting me keep some sort of control, by 'facing the enemy' if you will. But I doubt when the time comes, I will be so brave.

Elisabeth Kübler-Ross set the standard for looking at the process of death and the stages of grief which has helped to bring some understanding and clarity to the process, but I heard a line in a TV Series* where a police officer has witnessed the murder of a friend, and has a colleague who means well, who tries to lend his support but who is totally inept at doing so. When he keeps mentioning the Kübler-Ross model, her response is "So I'm following some sort of model. God forbid my feelings should be personal and unique!" and that is so often overlooked.

While there are stages to grieving and loss, each person's experience *is* unique and personal and can be quite different to those around them. We want easy answers and a way around the feelings and situations we're going to have to face, and whilst works such as Kübler-Ross can add some insight to the processes, they cannot reveal the answers on how to deal with the deeply individual, personal grief. There are no easy answers sadly and never will be. All we can do is go through the experience, nothing more but hopefully find help and understanding along the way too.
 


*Death in Paradise - Season 2, Episode 5. (Red Planet Productions/BBC.)

A Bit of an Update!

Update. There is so much to tell you, I'll have to bullet point it all.

1. Started Slimming World in Jan 2012 starting weight 19st 13lbs - now down to 14st 9 1/2lbs so far. My goal is to get down to 10st and see where I go from there.

2. Had a crap winter as I hit a brick wall after doing too much but had a fab year of seeing Mr Ben Miller a further two times, once at the BBC for the Filming of Room 101 (no photos allowed by Aunty Beeb) and again for a gig at The 100 Club where Ben and Danny John-Jules were taking part in an event called 'Karaoke Circus', travelling to Canada to see friends and also achieved a 41 year ambition of having my photo taken with William Shatner at a huge Star Trek event!

3. Algy continues to grow. I've been offered a referral for radiotherapy at Derriford Hospital in Nov/Dec or to the Royal Marsden Hospital in London (Chelsea) who might be able to fry Algy sooner. I've asked for the Royal Marsden as I can stay with a friend in London.

4. Have been told Algy is inoperable so the above treatment the only option with the intent of stopping him growing.

5. Made some *excellent* friends on twitter called #BensBabes,. You know who you all are! Plus Mr Miller has been *very* kind in lending his support with a couple of Brain Tumour Awareness days such as

 Wear Grey in Oct 2012 and Bandana Day March 1st 2013. Danny John-Jules (Cat from Red Dwarf) lent his support too, as did did so many friends!!!

6. Still breathing, still upright, still here!

The Passing of a Beloved Old Friend...

Something that has been rolling around the 'net and elsewhere for a while, but bears repeating here.

"Today we mourn the passing of a beloved old friend, Common Sense, who has been with us for many years. No one knows for sure how old he was, since his birth records were long ago lost in bureaucratic red tape. He will be remembered as having cultivated such valuable lessons as: Knowing when to come in out of the rain; Why the early bird gets the worm; Life isn’t always fair; and maybe it was my fa

ult.

Common Sense lived by simple, sound financial policies (don’t spend more than you can earn) and reliable strategies (adults, not children, are in charge).

His health began to deteriorate rapidly when well-intentioned but overbearing regulations were set in place. Reports of a 6-year-old boy charged with sexual harassment for kissing a classmate; teens suspended from school for using mouthwash after lunch; and a teacher fired for reprimanding an unruly student, only worsened his condition.

Common Sense lost ground when parents attacked teachers for doing the job that they themselves had failed to do in disciplining their unruly children.

It declined even further when schools were required to get parental consent to administer sun lotion or an Aspirin to a student; but could not inform parents when a student became pregnant and wanted to have an abortion.

Common Sense lost the will to live as the churches became businesses; and criminals received better treatment than their victims.

Common Sense took a beating when you couldn’t defend yourself from a burglar in your own home and the burglar could sue you for assault.

Common Sense finally gave up the will to live, after a woman failed to realize that a steaming cup of coffee was hot. She spilled a little in her lap, and was promptly awarded a huge settlement.

Common Sense was preceded in death, by his parents, Truth and Trust, by his wife, Discretion, by his daughter, Responsibility, and by his son, Reason.

He is survived by his 4 stepbrothers;
I Know My Rights
I Want It Now
Someone Else Is To Blame
I’m A Victim

Not many attended his funeral because so few realized he was gone. If you still remember him, pass this on. If not, join the majority and do nothing."

'Nuff said!

When is a Cancer not Cancer? Or is it also 'Benign' ?.

Interesting debate on the net - should all brain tumours be considered and called 'cancer'?  Even the low grade ones? The moniker 'brain tumour' rather than 'brain cancer' doesn't always indicate that whatever tumour one has in the skull, it can still be potentially fatal. My problem is mine is 'Grade 1' and so far non-malignant, so should I call it 'cancer'? Opinion is divided, that cancer is an emotive word and in respect to brain tumours, public opinion would have it that you're automatically dead! But then public reaction to the word 'cancer' can seem that way with any form, despite curative treatment and  increased survivability with some.

The other opinion is of course that any brain tumour no matter how slow growing, is cancerous and the word 'benign' is a misnomer. Cancer to me is where the growth of mutated tissue invades and changes the nature of the affected organ/body part cells by spreading within it. Benign is where the tumour remains in its own space but pressing against against the organ/body part, with the possibility of impnging surrounding tissue as opposed to invading it. Both scenarios are not good with fatality often being the end result with most if not treated, no matter how long term or slow that growth may be.

If opinions are correct about all brain tumours being 'cancerous' then certainly Algy by the very fact that he is growing could be considered a 'cancer'. In any event, within the skull and spine, tumours are even more damaging as there is no room for expansion and therefore tissue damage is greater what ever the level of aggression and invasion/impingement.

A sobering thought!

A link to a defintion of benign brain tumours. http://www.medicinenet.com/brain_tumor_symptoms/views.htm