Sticks and stones

Greetings earthlings.

I hope this finds you all well.

Let us hope this year is a better one than last year. It is highly likely it will be, but having a fatalistic attitude has served me well down the years. My expectation levels are always reassuringly low, so nothing comes as a surprise anymore.

I often see disabled people on TV who are doing amazing things and fighting adversity. They are inspirational and often exceeding what we thought was possible.

I don't fit into that "can do" category.

Instead I keep on discovering things I can't do.

For those of you who know me too well, I am a bit retentive. I hate mess and I am constantly tidying up, or more realistically, stuffing drawers and cupboards to give the impression of being tidy.

Anway this brings me on to "Things I cannot do in a wheelchair No.1435." I recently managed to burst a bag of split peas when trying to make a lentil curry.

I learnt that I cannot pick up individual split peas off the floor, either with my hands, or with a reacher. This took me a painfully long time to realise and was accompanied by horrendous industrial language. I spent the rest of the afternoon with the mess on the floor, taunting me, before I decided I'd leave it for my poor wife.

Another thing to add to the "Things I cannot do in a wheelchair" list. Ski-jumping and Ballroom Dancing are not things I'm resentful about not being able to do, but not being able to clean up the kitchen floor seems to have sent me over the edge.

I have been complaining to various medical professionals about a burning sensation in my side. This has gone on for about 3 years and I have been prodded, tapped and had an x-ray in my wheelchair. In the meantime I've been using hot packs, painkillers and oils to relieve the pain, all without much joy.

I was referred to a Gastroenterologist at the Royal Marsden in Chelsea as my stomach has been destroyed by steroids, chemo and radiotherapy and of course I had my mystery pain. I finally got to see him and was sent for tests and scans of all descriptions.

I don't think I've ever had so many weird and wonderful tests. This included a version of Orifice Countdown, where your only options are a big one from the top and a little from the bottom. For those of you who have no idea what I'm talking about, this involves what looks suspiciously like two garden hoses being shoved where they have no right to be. The probe down my throat was especially brutal on the way out, and felt like I was regurgitating a snake.

I now know what it feels like to be a rotisserie chicken.

I was also informed that having x-rays in a wheelchair are pointless so two other hospitals obviously have no idea what they are doing. The Marsden in Chelsea did it properly by laying me flat and found out that I have some pretty serious intestinal blockages.

They followed this up with an ultrasound and found that I also have many many gallstones.

I am also having two Radio-Isotope Nuclear Medicine scans to complete the tests and will be slightly radioactive for a few weeks. The letter says "avoid children for 2 weeks in order to prevent exposing them to harmful radiation." Hopefully I'll get the summer glow.

So hats off to Royal Marsden Chelsea for actually doing a thorough job and I feel like I am getting somewhere. Essentially I am full of c**p and an assortment of stones. Who knew. I'm just sorry it took so long to get the right tests done.

Whilst I am on the topic of missed medical problems, I was also told recently that I have Type 2 Diabetes. All the pin prick tests I have been having when I see the oncologist are not the most effective way of testing for diabetes. My thirst was ridiculous and I was constantly tired so I asked for a proper blood sugar test and it showed very high blood sugar levels. Being on steroids for six years has now given me diabetes. At least that is manageable. The ironic thing is we had almost eliminated processed sugar from our diets ages ago because we watch loads of health-paranoia telly and thought processed sugar was the devil. I was a few years too late it seems.

Apart from the blockages, stones and diabetes all is well. I am hoping that in the next couple of months I'll start to feel better.

Jay is well and has been creating a variety of writing exercises and grammar booklets for her pupils. English grammar is pretty complicated and it appears I have been guessing my way through the English language my whole life. I cannot believe how much 11 year olds are expected to know.

They are in safe hands with Jay as she is determined to help them as much as possible.  Plus drawing dragons once in a while in a while takes their mind off the past perfect tense and how to spell words most adults never use. Nice one government - whoever thought the best way to improve literacy amongst 11 year olds was to try and make it impossible for them to pass exams and be expected to be Dickens needs his or her head examined.

We recently went to a local borough Home Ownership day  after many years of renting our place and I spoke with various mortgage brokers. The first guy thought I was joking, the second was very grave and respectful and the third looked at me like I was mad. It turns out that lenders aren't very keen on the terminal illness thing. I did try and point out that technically I should have been dead 5 years ago, but they weren't impressed.

It looks like I'll have to invent something or design an app for a phone to make any money. I have no idea how to become a tech millionaire.

Have a good summer or winter depending on your hemisphere and I'll keep in touch

Love to you all.
Bruce

There's a Gorilla in our midst....

There's a Gorilla in our midst....

Hello everybody,

I hope you are all well and had a good summer.

I have now completed my one year of Temozolomide Chemotherapy and have thankfully been given a break from treatment, after scans and a consultation revealed no growth of the tumour.

I had the MRI scan last week and was asked the million dollar question: 'Do you want music during the scan?' Experience should have taught me to say no, but I rolled the dice. After I said yes, I was asked what music I liked and after making a joke about preferring Peruvian Psychedelic Rock they stared at me blankly and said they'd put on some music. One horrendous pop song later I was cautiously optimistic it would get better and then Bruno Mars came on.

I have nothing against the little melted troll but the CD stuck about 20 seconds into the Bruno Mars song.

For 1 hour.

I waited for 20 mins to see if my zen-like demeanour would be altered by the combined sound of a hammering MRI machine and a very loud stuck CD.

I waited another 20 mins because I am patient and didn't want to stop a scan because of a stuck CD.

I then waited another 20 mins because the bell thingy they'd given me to alert them if there was a problem didn't actually work.

So after 1 hour they stopped the scan to inject me with contrast dye. I was very clear I didn't want any more music. It had been like Guantanomo Bay style mental torture. At least the song wasn't Barbie Girl on repeat.

A few days after the scan we had a meeting with my primary oncologist. He was smiling and jumping up and down. Maybe they'd found gold in my spine? No. The scans showed that it still looks a complete mess.

However, the tumour has not got any worse and according to him I am part of a group of less than 1% of his patients that survives this long. He really is such a positive guy, but for some reason he rewarded me for still being alive by slapping me really hard on the back. Never in my life have I had to stifle a scream so much - getting slapped on a tumour is pretty painful. Anyway, it certainly woke me up a bit.

Thank goodness for that and that means no chemo until at least February when I get scanned again. When I was taking chemo, I would eat sugar-free sweets to take away the nausea and taste of the pills. Then I got to the stage where the taste of sugar free sweets made me feel sick. By last month thinking about sugar free sweets made me feel sick. Nausea is a real pain. The feeling of almost being sick the whole time. Luckily the anti-nausea pills are pretty good but have side effects. They really bung you up. I mean really bung you up.

Being an inquisitive person I googled potential solutions and found a website created by expectant mothers taking this drug, Ondansetron, for morning sickness. I thought I had it bad, but some of these women were carrying more than babies. One was carrying 'more than a baby' for 3 months. 3 months without a toilet break resulted in a trip to the hospital for an induced delivery of the backlog. Wow.

Now my next problem is to get off steroids. They make you get fat quickly and after a year I can barely fit into my wheelchair. Too much sausage, not enough skin. So I am trying to reduce the steroids slowly without alerting my tumour to the fact. Last time I went off steroids the little chap decided to grow. So I am doing it slowly and hope to see the results.

I spent a year in South Africa and Botswana years ago taking huge amounts of steroids without anything to counteract their mood altering effects. At least this time I take medication to counter the paranoia, anxiety and rage that they induce. So hopefully I am bit calmer and more rational. I still support Liverpool and the Springboks which means an unhealthy level of pre-existing anxiety. Physically, the roids have made my head and body puff up like a balloon.

One other thing my darling wife noticed is that I now have an uncanny resemblance to both Harambe (R.I.P), as well as the smiling gorilla in the Gorilla Duct Tape Advert.

I suppose the glaring difference is no-one has tried to shoot me yet and if I ask nicely, I am let out of my enclosure once in a while. It doesn't bode well when you appear closer to a primate than anything else. Oh well. Hopefully reducing steroids will help reduce me to the size of a small primate.

I have had my cousins Cal and Ryan over a few times. They managed to arrive in Reading as part of a London adventure on the same day. Same place and same day, but one was travelling from South Africa and the other from New Zealand. Without ever communicating with each other. What a coincidence. They didn't find it that amazing. Having my two young cousins around, usually in some state of inebriation, has made me wish I was younger and also made me realise how old I am. It is pretty liberating to not have much to stress about.

Jay is well and is still reshaping young minds and ensuring the highest standards in grammar exist at her school. She has even created grammar booklets for the kids as an easy reference. I have been doing a lot of copy editing work recently and use the primary school grammer booklet often. It worries me slightly that I have zero recollection of being taught any grammar at primary school and that ten-year olds are now expected to know that much.

Jay and Carolyn also completed a 40-length sponsored swim at Brockwell Lido to raise money for Macmillan Cancer Charity. It was in the middle of October which means the water was seriously cold. We were freezing on the sidelines watching, sipping on coffee, so swimming must have been a nightmare. They both completed it in a really good time and raised a decent amount of money so thanks to all of you who contributed.

Speaking of getting wet, during the summer we tried to have a typical English short trip to the beach and booked a hotel room for the night We both even downloaded new weather apps for our phones just to be extra vigilant. We picked a day when it was meant to be hot and headed to Bournemouth full of optimism.

After 3 hours of intense traffic we arrived and found congestion so intense and ill-tempered that we decided to pay a lot for parking and be done with it. I didn't have the heart to tell my wife that my weather app on my smartphone had shown clouds following us the whole time.

By the time we had negotiated the heaving crowds and found somewhere fairly quiet it was pretty cold and a bit wet. It seemed that all of humanity had converged on Bournemouth Beach that day, specifically to take a few steps forward, then stop right in front of me and look around aimlessly.

The day at the beach ended with hot coffee and a message from friends in London, telling us it was over 30C there. I think they said uncomfortably hot. That really hurt.

When we finally got to the hotel we were told there was no parking. I nearly threw the blue badge at the parking guy and thankfully he made someone move. Day at the beach over.

Of course the next day we found a wonderful quiet beach with loads of facilities. It was still cold and wet though. Jay decided there was no point coming all the way to the beach without swimming and had little dip. The sea too, was cold and wet. After a minimum amount of swimming time Jay spent the next hour trying to warm up.

One of the main problems of being in a wheelchair, and there seem to be many, is that beaches are inaccessible. I have to park myself on the promenade and look wistfully out to sea. I have tried my wheelchair on the sand and it is a non-starter.

It is not too bad with other people around. However, when you are by yourself it is a bit weird just hanging out next to a dustbin with benches and the seagulls for company. It was still hot in London so we left the South Coast straight afterwards. Still, it was nice to get out of London for a day.

We recently went to Hammersmith Apollo to be part of the studio audience for the recording of two episodes of Live at the Apollo. Two shows, three acts each show and a lot of laughter. I recommend going to see Adam Hills, Gina Yashere and Michele Wolf if you get the chance. Special mention has to go to Sam Simmons for being a combination of a modern one-man Australian incarnation of Monty Python and a demented Super Mario Brother.

Nothing better than spending three hours laughing. And it was free.

So everyone, we are as well as we can hope to be, and looking forward to Christmas with family.

Have a wonderful Christmas and a festive New Year and I'll try and update the blog more than once a year.

Lots of love to you all.
 

The Allardyces of Archiestown

The Allardyces of Archiestown

What does Remembrance Day mean to me? I am a 36 year old with no military background or real understanding of the experiences of those who have lived through the horrors of war. This doesn’t stop me from being stirred by the Cenotaph ceremony or being filled with pride and admiration for the veterans taking part in the march-past every year.

Like so many of us, I have a familial link to those who we will honour on Remembrance Sunday as my family suffered tragedy on an unimaginable scale. As each year passes, it becomes increasingly important for us to never forget what happened.

As a child my grandfather told me the story of his father and his role in the Second World
War. He wanted to tell me everything, but still found the circumstances of his father’s death too distressing to discuss in detail. The photographs of my great-grandfather always took pride of place on our sitting room wall.

My great-grandfather, Captain Ransome McNamara Allardyce, was the youngest of four brothers, all born in Dublin to George and Janet Allardyce. His father, George Allardyce, was a Scot from Archiestown in the Scottish Highlands who had moved to Ireland to work as a master tailor, making riding habits for the gentry of Dublin. George and his wife Janet raised their four boys in a modest house in Ranelagh, in the south of Dublin. 

Three of the four boys would go on to train as doctors.



Father George Allardyce with William (left) James (Right) & Ransome (Sitting)

All of the Allardyce brothers would die in the two World Wars.

The oldest brother, George Gilmour Allardyce, started his studies to become a doctor in Dublin before moving to Australia at the age of 17. Following the outbreak of war in 1914, he enlisted as a Private in the 4th Australian Field Ambulance, giving his occupation as a medical student, and by 1915 he was fighting in Gallipoli.

By 1917, whilst serving on the Somme, where he was gassed and later evacuated to England. He was selected for officer training and by 1918 he was appointed 2nd Lieutenant in the 4th Battalion Australian Infantry and returned to fight in France. After suffering injuries to his head and leg, he was again evacuated to England where he died from his wounds in 1918. 

George was 22 years old.

The second brother, William Swirles Allardyce, was training to be a surgeon at Trinity College Dublin and was a third year medical student in 1916 when he enlisted in the Navy with the rank of Probationer Surgeon. He was lost at sea that year when HMS Negro collided with the destroyer leader HMS Hoste, resulting in the deaths of over 50 sailors.

William was only 19 years old.

By the time my great-grandfather, Ransome, began his studies to become a doctor at Trinity College Dublin in 1920, he had already lost his two eldest brothers.

Ransome’s surviving brother, James Craig Allardyce, had chosen a career in the military and entered the Royal Military College in Woolwich in 1916. He was promoted to Captain in the Royal Artillery in 1918 and served in both World Wars. During the First World War, he served with the Indian Mounted Artillery in India, in the Mediterranean and in Iraq. He was later wounded in France but after the hostilities had ended, James remained in the Army.

He was seconded as a Lieutenant in the Auxiliary Forces in India where he married Kathleen Louise in Lucknow in 1924. He was promoted to Captain by 1929. During the Second World War he saw service in Assam, Syria, Burma and Ceylon. Due to ill health, he was sent home to England where he died at the Military Hospital Fulford in York in 1944. He had finished his distinguished military career as a Brigadier General in the Royal Artillery.

He was 45.

My great-grandfather, Ransome, was the youngest of the four boys. He trained as a doctor at Trinity College Dublin, and practiced as a General Practitioner in Manchester, before moving to Japan in 1934 in order to work as a surgeon.

Ransome Allardyce

He moved to Japan with his wife Madeleine and their three small children: my grandfather George and his sisters, Jean and Anne. Ransome worked as the Superintendent of the International Hospital in Kobe-Honshu until 1939, when life became too dangerous for them to remain there. He sent his family ahead to seek refuge in Australia, as passage to Europe wasn’t possible due to the outbreak of World War Two.


Ransome with wife Madeleine, George (left), Jean (centre) & Anne (right) Japan

His family arrived safely in Australia and were given refuge in Sydney and later in rural Armidale. Before leaving Japan, Ransome gave most of his possessions to his servants, destroyed his car and smuggled out some pearls. He was briefly reunited with his family in Australia before he took up a position in Singapore as a Captain in the Royal Army Medical Corps.

He was working as a doctor at the Alexandra Road Military Hospital in Singapore in February 1942 when the country fell to the Japanese. When Japanese troops broke into the hospital and began firing indiscriminately, Ransome decided to challenge them. As the only person who could speak some Japanese, he hoped to reason with the soldiers. 

A Red Cross representative witnessed Ransome walking down a hospital corridor to speak with the Japanese soldiers. He was never seen alive again. His body was found the next day in a mass grave and he was later buried at the Kranji War Cemetery in Singapore. More than 200 people were shot or bayoneted over those two tragic days in February 1942, in what later become known as The Alexandra Hospital Massacre.

He was 39 years old.

After the Japanese Army occupied Singapore, his family still had no definitive news about Ransome. They assumed he had been taken prisoner and Madeleine became ill from worry during this uncertain time. In 1943 the family were erroneously informed by the War Office that Ransome was still working as a doctor in occupied Singapore, however, they later found out that he had died during the fall of Singapore.

They were eventually repatriated back to the United Kingdom. Madeleine and her three children embarked on the five-week voyage to London in March 1947, before travelling up to Scotland. They left summer in Australia and arrived in the middle of a harsh winter to live with George and Janet Allardyce in the village of Archiestown. 

Madeleine had lost her husband and her children, their father, and George and Janet Allardyce had suffered the unimaginable tragedy of losing all four of their sons.

After a few months in Scotland, Madeleine and her children left Archiestown and moved to Dublin where they finally had a home of their own and could try and rebuild their lives. Thankfully, my grandfather and his sisters recovered to lead full and happy lives as the memories of the war gradually began to recede. The trauma of what had happened never completely disappeared but simply faded into the passage of time. 

In the village of Archiestown, in Knockando Parish, there is a war memorial that honours the names of all the men who lost their lives in the two World Wars. A short service is held on Remembrance Sunday every year to remember the young men of the parish who answered the call to arms in 1914 and again in 1939. All of these men, including the Allardyces of Archiestown, paid the ultimate price and their sacrifice should never be forgotten. 

Of all things the bed is the best/ If you can't sleep you still can rest - Italian Proverb

As usual, once I start writing updates for my dormant blog, it occurs to me I haven't written anything for months.

No matter what is happening in our lives, time marches swiftly on.

Nine years after starting my post-graduate course at the London School of Journalism, I finally wrote all of my exams and submitted my work and somehow graduated with a decent mark. I wasn't merited for my speed.

When I started at LSJ so long ago, I actually fancied myself being a bit of a John Pilger, exposing heartless corporations and ruthless governments, and making a nuisance of myself.

A few years of hospital soon put paid to that. You can still write from home or find stories if the locations you visit have wheelchair access, but it does limit your scope a little.

Obviously getting sick on top of that really doesn't help your journalistic career. Spending over a year in bed was pretty unhelpful as well.

However, whatever I am lacking in the necessary skills to be a decent journalist, I am lucky enough to make up for with a surplus of stubborness running through my veins which allowed me to finally finished the course. So the epic battle of trying to imagine articles to write without leaving my flat is finally over thank goodness. I have managed to get a few jobs as a copy editor. Not very exciting but money is money.

In October last year my condition deteriorated and scans showed the little b*****d had been growing considerably so it was back on the chemo again.

Since then I have had seven courses of Temozolomide chemotherapy and the latest scans this year have shown no real change since the tumour got worse in October.

Of course part of the treatment plan involves taking industrial doses of steroids again which means all the nasty side effects are coming back to haunt me.

I spent years reducing steroids only to be put back on them again. Unfortunately, I have returned to being like an inflatable beach toy with a giant head, but apparently I really need steroids.

To prove the doctors wrong and to limit the side effects, I stupidly tried to reduce my dose a bit and all it has done has put me in more pain.

Generally speaking, the plan from my oncolgists is to continue monthly chemotherapy, monitor my bloods, have scans, take steroids and hurry up and wait as they say.

I am in pain most days now and have recently started taking morphine as well as the usual painkillers to deal with it. I find being a Springbok and Liverpool fan hasn't helped my pain or stress levels.

For some reason morphine just makes me a bit goofy and itchy but doesn't provide much relief. The best thing to do in these situations seems to be to just go to sleep and hope the next day is better.

These days, by six in the evening, I am pretty much done and have to get into bed to give my back and mystery pain in my side a rest.

So I am not much fun at parties anymore, but I'm sure my previous one-man crusade to rid the world of Sambuca and lonely pints at closing time isn't missed by many, especially my wife. I suppose we all have to grow up eventually, whether we like or not.

Speaking of my lovely wife, we recently celebrated our 5th wedding anniverary (16 years in total) and we are going to treat ourselves to a meal at a decent restaurant.

Jay is still teaching in the afternoons and has designed loads of grammar booklets and activities to help the poor little nippers through their exams. I really feel sorry for kids these days. Not only are they continually assessed and analysed, they always seem to be under pressure to meet unrealistic expectations.

Of course, that means teachers have to work doubly hard to manage everything.  I get to listen to loads of teacher talk when we have teacher friends over...

At the same age, all I did was pick my nose, daydream, draw cars and talk a lot.

Nowadays kids are expected to explain the ins and outs of the Large Hardron Collider in their Standard Assessment Tests (SATs) or explain why English has loads of silly grammar rules. I tried to answer a maths question aimed at an eleven-year old and nearly had a nervous breakdown.

Gone are the days of rocking up at school dressed as a swordfish or telling your teacher you have a pet dragon. In the old days in Zimbabwe, if you could spell your name correctly on your exercise book, count to ten and use a toilet dilligently, that usually ensured a safe passage to high school.

We went up to Scotland for our first mini holiday in four years. We visited some good friends and did a bit of sightseeing, including a trip to a tiny village in the Highlands where my great-grandfather and his three brothers hailed from. Their deaths in the Great Wars (yes all four brothers died) are commemorated on a mini-cenotaph.  It was quite an emotive experience seeing their names and visiting their village. I'll put their story on my blog at some stage.

All things considered, we are both okay and looking forward to some sunshine and summer socialisng. Given that I am supposed to have expired some time ago, things could be worse. I appear to have taken on the fatalist attitude of a Russian novelist who has just been told by the doctor to give up vodka and is trudging home with a stone in each of his shoes. This morbid outlook seems to work for me.

Most of all, I am looking forward to going to sleep nice and early. Not exactly exciting but essential.

So take care, see some of you soon and to everyone else have a great summer.

Polio virus to treat GBMs - finally something positive

This looks like the first realistic possibility of treatment for Gliobalstomas.

http://www.forbes.com/sites/davidkroll/2015/03/30/60-minutes-covers-dukes-polio-virus-clinical-trial-against-glioblastoma/#1822d22869b5 


The 60 minutes show is available online

http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/
http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/

When all else fails do something stupid

Merry Xmas Everyone

I hope you all had a wonderful Christmas and a festive New Year.

We spent Christmas at home with Jay and my father and mother-in law, eating professionally, before spending New Years Eve with friends eating some more.

I think I have finally had enough of consumerism. It felt like Xmas has been plugged since August. People were eating mince pies in October. Then there was Black Friday, Cyber Monday and now Panic Saturday. When credit card bills arrive in the New Year there will undoubtedly be Suicide Monday. I'm glad to see Valentine's Day is being vigourously promoted already.

January seems to be the time when everyone tries to get rid of unwanted Christmas presents on Ebay.
So, if you are in the market for a formal tie made from a preserved trout, a Mugwort Vaginal Steamer or a toilet seat in the shape of Darth Vader's head, then hit the internet and all your dreams can come true. Surprisingly all of these wonderful gifts are real things.

Due to the chemotherapy thinning my hair I have taken to wearing a hat. I wanted the Don Draper look but I can't be bothered wearing a suit every day to match my Fedora, so instead settled for the geezer look. I tried a few hats and the only thing that suits my abnormaly huge head is a flat cap, so I now look like I race pigeons and greyhounds, or sell fruit and veg from my car boot.
I had a scan on the 4th of January and things haven't changed since November. So the tumour has stayed the same size which is good news I suppose. It means the chemotherapy has stopped it from growing for the moment.

I decided to increase the pain in my head the old-fashioned way by being stupid and banging my head. I tipped backwards out of my chair a few nights before the scan, smacking the back of my head on the pavement, but thankfully I didn't do too much damage, though my pride took a hammering.

I have an infection again, so I am not well enough to go on chemo at the moment, which is frsutrating as I have a lot of exams coming up and don't want to be ill on those days. They are treating me for the infection before I start chemo, but it seems to be a never ending cycle of the chemo making me sick, then I can't take it. Then when I can take it, I am sick again shortly afterwards.

Doctor knows best as they say.

My blood results always seem to show high infection markers or low platelet counts. I need to eat more spinach or kryptonite or something.

So all in all, we had a good Christmas and now the January detox begins. There seems to be a lot of diet shows on TV at the moment which is a good indicator of the level of general over-indulgence. So bring on the quinoa, mackerel, chia seeds and other super foods. I am not looking forward to it, but luckily Santa and my lovely wife bought me a Nutri-Bullet so I can liquidize everthing. Delicious.

Best wishes and take care,
Bruce

Round 2 of the Merry-go-round

Hi everyone,

I managed to find myself in hospital again, the night before I was meant to start chemo.

My platelet count was 50, which is apparently not good, and after being discharged at 6 in the morning, we dragged ourselves to the Marsden for my appointment. They took my blood and I passed out for the first time ever, so the pholobotomist panicked and wheeled me to my appointment. It was an ignominious entrance. My arm is black and blue, as a low platelet count basically means your blood is too thin and you bleed and bruise easily.

All of this meant that the Doctors couldn't safely give me my chemo. This meant a holiday from the poison last week. By last Thursday it was in the 200's and now it is back to normal.

My reward was starting chemo yesterday.

Thankfully I am on a smaller dose, but missing a week means I will now be on chemo over Christmas which is good news for turkeys and other edible Chrismas animals.

I have decided to see as many of friends as possible so have been a real socialite. We have portable ramps so if I know you, be prepared for a home invasion sometime soon.

Taking steroids again has at least given me some motivation and studying and doing a bit of work here and there is keeping me busy.

Pub lunch with the homies

The Ladies of South London

30th Birthday with Cuz Ross

Darling Wife and Candy

Sam giving it some blue steel

Sam & Candy's kids, Isla and Faye, being cute

So all in all, despite the medical sh**storm, we are trying to make the most of it and get out and about.

The next thing we have planned apart from enless socialising, is going to watch Bill Bailey live, which should be fun. At least I know I can't be called up on to the stage as their are no ramps. Result.

Until next time, have a great Christmas and a Happy New Year.

Infection time

That was quick.

Four days after finishing Chemo Round One I found myself in hospital.

I was feeling a bit rougher than normal at the beginning of the week but I am used to feeling rough so paid no attention to it. I thought it was a dose of the blues after watching a lifeless Springbok semi-final defeat, but when I started passing blood I realised it wasn't a sport related malady.

After calling an ambulance and being picked up by a paramedic duo called Ben and Jerry I was admitted to St. Georges on Tuesday and given IV antibiotics. I have a bad Urinary Tract Infection so had to spend a couple of days in hospital. I am such a frequent flyer that I knew at least three of the nurses and doctors so they kept me entertained. The Emergency Room is used for a TV programme called '24 hours in A & E' and is busier than any train station I have ever been to.

The worst part of it all is that there was no internet access or phone signal. So apart from getting IV three times a day, I was also forced into a digital detox with no internet and email. That was brutal. I feel very detached from the world when I can't get online. At least it forces me to write the blog when I have been incommunicado for a couple of days.

I also learnt a valuable life lesson. Junior doctors all need to go on more training when it comes to taking blood and inserting canulas. The first doctor who treated me tried four times to insert a canula into my hand without sucess. I always maintain a very stoic attitude to pain, but considering my hands are the only part of my body that actually work this was a bit much. I was relieved when I spotted a specialist nurse I knew walking past. I asked her do it instead and 30 seconds later it was sorted.

They lost my initial urine sample so they aren't totally sure exactly what specific infection I have. Needless to say after a couple of litres of IV antibiotics, the infection isn't identifiable anymore. When I was speaking to the consultant, some guy came up and told us they couldn't isolate the infection from a later urine test. The consulant and I both started laughing as I had taken enough anti-biotics to cure a herd of cattle.

So I stayed on the acurte ward until last night. I convinced them to release me early and we literally bolted for the exit. The staff are always amazing and try really hard, but I can't manage my own drugs when I'm an in-patient and need an air mattress and to be turned at night because of my skin, and these things invariably never happen as planned. So, being at home is actually safer once I have the antibiotics I need. So I have pretty strong meds for the next week or so and feel like I have overcome a hurdle for the next couple of days. Plus, the amount of money we were spending at the Marks & Spencer food shop at St. Georges was becoming a bit ridiculous so we needed to get out of there.

Jay and I finally made it out to the car from the ward at about 8pm last night and were parked in by an ambulance for an hour which seemed like an ignominious exit after negotiating an early release. My sister-in-law Gaylee has come to visit from Spain, after spending the year working on a yacht on the Mediterranean, so it is great to have her here entertaining us, feeding us and keeping my wife on her toes. It is a pity she has tonsilitis which hasn't been fun for her. They have gone shopping on Oxford Street on a Friday evening which requires a level of committment and rash conviction I don't possess.

Hopefully the rugby final between the Aussies and Kiwis will be an exciting competitive match. For me, as a Springbok fan, I feel like I've won tickets to see Kings of Leon but they've been replaced by Chumbawamba at the last minute.

I'll watch it, but only just. Lots of love, Bruce

Back to square one

Hello All,

I decided to take a break from writing my blog this year. Not because I was emotionally drained or depressed, but for a more positive reason: I was finally turning a small but significant corner.

By early this year, my pressure sore had finally healed and I could get out of bed and go outside. I don't live in an area of outstanding natural beauty by any means, but it was great to go outside or to go to the movies and see friends. The slog of being bedridden for about a year and a half was finally over, and the combination of a serious pressure sore and being on life-support for septicemia hadn't killed me, so I was feeling pretty good.

I managed to get off all the drugs that made me sleepy, sloppy and unfocused. I also reduced my steroids right down so I felt lighter and less bats**t crazy. I also got to bid the flesh eating maggots and vacuum pump adeiu from my thigh and generally felt a lot better.

It is amazing how being ill and bedridden simply makes time vanish, and before you know it many years have slipped away. So I basically got out of bed and thought I'd better do something. After a few weeks of not being able to sit up straight and being dizzy from lying down for so long, I could finally move myself around fairly well. Kind of like having to learn how to walk again, just with wheels. Anyway it took some getting used to.

Then reality hit me as it does.  I haven't worked full time for a long time and have a terminal illness, which isn't great for borrowing money or job prospects. I can imagine some sharp-suited Bank Manager or HR person asking me in an interview where I see myself in two years.... I don't think saying "um, in an urn, on the mantelpiece," is appropriate. So it has been hard to know what to do next and make plans for the future. 

Anyway I managed to get a bit of work copy editing and doing some technical writing for friends which helped alleviate the boredom because, with new found freedom, comes an immense level of boredom and restlessness. Plus I think I have watched every decent box set ever made. Thank you Mad Men, Top of the Lake, Bloodlines and Friday Night Lights for keeping me sane.

I have since resumed my post-grad diploma with the London School of Journalism for the third time. I have been there for longer than some of the staff it seems. Anyway they have kindly let me attempt to finish the course that I started, maybe 8 years ago. It is a bit of a monkey on my back and I really would like to get it finished sometime this century.

My lovely wife is well and still teaching in the afternoons at her school in South London. She enjoys her tutoring sessions with the kids and I think the school really values what she does. She has just started doing a part-time course at her old university in Roehampton, which is focused on how to help kids with dyslexia. It is really quite technical and apart from diagnosing everyone she meets with a mild form of dyslexia, she is well and manages to work and look after me somehow.

Of course as soon as it was all looking rosy, I started getting a lot of pain at the base of my neck and in my shoulders last week. So it was off to get some morphine and a MRI. The last scan in April 2015 had shown tumour stability and even some improvement, but the scan I had last Tuesday now shows some damage further up my spine and the cancer has spread in both directions up and down my spine. This is not good news obviously.

When I met with the oncologists yesterday we agreed to start on chemotherapy so I am back on Temozolomide immediately. I will take a course of the drug every month for the forseeable future, however long that may be. I haven't lost any more mobility yet, but obviously the chemo and pain aren't much fun. Onwards and upwards I say. At least this is all happening in the middle of a great Rugby World Cup.

Thanks for the messages and support. I am lucky to have so many good friends. It has been a difficult time over the last 6 years. I have had people set up fundraisers in the UK, SA and Zimbabwe and even as far away as Australia over the last few years, which really helped us. People have sent me miracles cures, prayers, spiritual interventions, fishpaste and many other things which we appreciate. For now all I need is a bit of divine intervention.  Take care and I'll be in touch.

The more things change, the more things stay the same

Hello Peeps

I hope you are all healthier, happier and wiser since I last communicated. Somehow the ***!!!! previous blog has disappeared. Of course, it was hugely funny, insightful and thought-provoking. Alas, cyberspace (or potentially the author's incompetence) has claimed another victim.

Recently, I have been getting up out of bed more regularly and going out a bit which is really positive. I hadn't gone out for over a year so just going outside for a meal and to the movies has been a treat. I have lost a year in bed but once I had a hair cut and shave, I was ready for action. Progress is slow as my pressure sore, although healed, is prone to blistering if I sit out for too long. So far I'm up to about six hours at a time.

I still spend a lot of time stuck in bed and I think I probably watch too much TV. I am relatively confident I can now fly a small plane, run a ruthless criminal enterprise as well as process a crime scene without contaminating it. Who says TV teaches you nothing? Thankfully, I have still been reading so my brain isn't complete mush. 

Since I have been paralyzed I have seen many "cures" for paralysis hit the news. Stem Cells, Electric Impulse Therapy and many other cures have been bandied about and the painful truth is that all of it is rubbish.  Then the other day I watched this  http://www.bbc.co.uk/programmes/b04mm8zl 

I was pretty much blown away as it seeemed there is some hope of a cure. That is all you need to keep going. Click on the link and spend a little time watching the Panorama programme as it is amazing.

Of course I have a tumour that is causing all the problems. I have decided that once I have had a scan next month, and if nothing has changed, I will explore the option of possibly finding a surgeon who is willing to operate on me. It simply does not make medical sense that I am still alive if I have such an aggressive tumour. The NHS can't treat the tumour further and, the last time we checked, they were not willing to remove it, but I am not going to keep sitting around and wait for it to do something nasty.

In other news, last week I was quietly celebrating a year of hospital-free existence. This was shattered when a nurse decided to catheterise me with what seemed to be a crossbow bolt.  I lost a lot of blood and my wife nearly fainted but she powered through. It was like a scene from a Halloween movie and I ended up in A&E again. 

Thankfully, for once I didn't get a bad infection so just spent a few days in Hospital and was released with only a small pressure sore to show for it. In a fit of Victor Meldrew-like stubborness, I refused to pay £7 a day to watch television so for entertainment I read a couple of books and watched a patient who looked like a pirate, behave like a pirate - screaming 'aargh' a lot and attempting to destroy the ward.

Jay is well and still tutoring kids in the afternoons, slowly becoming a grammar guru. She has also inadvertently become a nurse over the last couple of years with my continual run of bad health, and has learnt a lot from one of the District Nurses so looks after me amazingly. Otherwise we are both well and will be spending Christmas with Den, Pegs and Gaylee at home. I will make an effort to update this blog more regularly. I hope you all have a great festive season and a happy New Year.

A wasted year

There are too many different people in too many different places who have had their own trials and tribulations over the last year for me to get away with a generic "how are you?". That's all I can come with up right now. So I hope you are all well.

Like a giant rock I have spent nearly 365 days unmoved, gathering dust, fixated on the immediate surroundings of my bedroom. I have got up maybe ten times in a year, never for more than 45 minutes at a time. Peeking into the kitchen on one of my rare excursions was genuinely exciting so that sums up how low the bar is in terms of my entertainment. To be fair I did have a dramatic six weeks in hospital and the hospice with septicaemia but that wasn't exactly fun.

My pressure sore has finally healed but the skin is so susceptible to breaking that I can only get up for very short periods in a reclining wheelchair and then have to get back into bed to take pressure of the area. Thankfully the wound healed after having vacuum dressings and Welsh maggots thrown at it amongst other things. This has also reduced the time spent by large amounts of Health Care Professionals with clipboards gathering around my backside like it's some sort of tourist attraction.

Life has been the usual combination of frustration and boredom because I'm bedridden, but without any real fear as by some stroke of luck, fate, whatever you want to call, my Gliobalstoma Multiforme appears to be on holiday. From all I'd been told and all I'd read, these tumours don't go on holiday. Once it had been classified as a WHO Grade IV tumour then I was basically waiting to die. Now nearly three years later I am still very much alive and a little bit dazed and confused to be honest.

I initially spent a lot of time downloading end of life literature and travelling around saying my goodbyes to people, which was emotionally challenging for us and those involved. Now I am still here but it doesn't feel like success or like I've beaten this disease. The oncologists scanned me last year and said there is no tumour growth. They do not want to see me until I exhibit symptoms of cancer. They cannot tell me I am better. I don't blame them but I resent the complete ambiguity of their responses. To them my situation is simply life being extended and nothing more. I still wish science was exact.

Now the next time I hear a story of someone's elderly relative who was told they had a week to live but has now joined Cirque Du Soleil as a lead acrobat, I might throw up.

It's a bit like standing on the edge of a busy motorway with your eyes closed knowing that eventually someone will crash into you, but you just don't know when. I am not a fatalist or one of those people who is obsessed with their own mortality. An acceptance of what's going to happen in future is not an uncommon feeling in people, but I don't think it is healthy for most of us. However finding the willpower and motivation to change my future is proving more difficult than I thought. Once I am up then I can start to go out, interact with the world and try and carve out some kind of a future without worrying about dropping dead.

My lovely wife is well and is still at her old school, tutoring in the afternoons. With me bed bound she has to do absolutely everything for me as I cannot even get up to get a drink at the moment. Jay has been through the mill over the last six years and I am a very lucky man as she has had to be a nurse as well as a wife, as we both agreed that it was more practical and less intrusive for her to learn how to perform a lot of the tasks the nurses are meant to do. Otherwise she has been busy with baby showers and weddings as summer is so busy.

Summer, however, seems to bring out the worst in some people. The estate we live on seems to be infested with loud, continually drunk idiots who spend lovely sunny days hoovering alcohol, shouting obscenities at each other before the inevitable descent into violence. Oh well, at least the police will always have plenty to do. When I am up I am going to get into my wheelchair armed with a taser and dispense some neuromuscular incapacitation that doesn't involve 5 litres of White Lightning cider. Hopefully my next blog will not be written from a prison cell.

Goodbye for now, thanks for the visits, messages and help over the last year and even though I don't drink I hope to resume my position at the head of a bench at my local pub sometime soon.