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.

Septic Boy

Hi there,

I hope this finds you all well. By now some of you would have found out about my last six weeks or so from Jay sending out information.

Six weeks ago we decided that I would go to Trinity Hospice for some respite care so I could have some medical advice and Jay could have some rest from having me at home for twenty-four hours a day. I have been bedridden due to the pressure sore since August the 4th and that is quite trying for both of us, especially with my ongoing psoriasis issues.

So I arrived at the Hospice at lunchtime on Monday 23rd September.  I had a general check up by the doctor on duty and all was fine.  By later that evening I started to get a bit of a temperature.  By midnight I had developed a severe fever and uncontrollable shakes, and was sent straight to St.Georges Hospital, Accident and Emergency. By this stage I had gone into septic shock which meant that the infection had started to interfere with my organ function.  My blood pressure dropped to such a low level it was preventing my organs from receiving enough oxygenated blood and my heart rate was through the roof.  They worked on me in A&E until the early hours of the morning when I was then transferred to ICU.  By this stage my kidneys and stomach were shutting down but they continued to dose me up with huge amounts of IV antibiotics and a variety of other drugs.  Eventually by late lunchtime on Tuesday I was beginning to respond to the drugs.  

We then had a few more stressful days where I was pumped full of more antibiotics and had loads of medication to lower my heart rate, raise my blood pressure and oxygenate my blood. Essentially it was touch and go whether I would make it, and thankfully I did with the help of a load of ICU doctors and nurses who do an amazing job.

I spent a week in the Intensive Care Unit going slightly crazy and had a touch of paranoia, delusions and confusion which didn't help things. Apparently ICU delirium or psychosis is not that unusual, but I didn't realise that as I was hallucinating and thought that everyone was out to swiss-cheese me. I was so determined to get out of there so I was happy when I got discharged back to the hospice the following Wednesday.  Unfortunately, I got a fever again and landed up back in hospital the next day for another week.

After that I went back to the hospice where I was put onto another dose of IV antibiotics for seven days as I was still showing signs of infection.  I spent a few weeks there and I am now back at home after five long weeks of hospital and hospice stays. Thankfully everything has stabilised for me and whatever caused the sepsis has gone. They never figured out whether the pressure sore caused it or whether it was an infection from somewhere else, but it was pretty scary nonetheless.

So now I am back to square one after setting another interesting challenge to the medical community to keep me alive. My pressure sore is looking less horrific and hopefully it will improve so I can be up before Xmas as I am going a bit nuts being in bed all the time. I don't know what's next but I would like a bit of a break.

Hope you are all well and keep in touch.

Under Pressure.....

Hi everyone,

Thanks for the birthday messages for myself and Jay,

The day before my birthday I ended up sitting in my shower chair for 12 hours and my body gave me a non-refundable gift - a Grade 4 pressure sore on the back of my leg. I have a 14cm gash that has to be dressed every day by either Jay or the nurses and I have to lie in a way that takes pressure off the area.

The really scary part is that I can't feel a thing, but there have been a few audible gasps from the nurses when they first saw the wound, which is never a good thing.

It is really disheartening as we had worked so hard to get rid of the wounds on my legs. However, I am completely bedridden and will be until these things start healing. So far it has been over 300 hours lying in bed on an air mattress that seems to be built for discomfort.

I can't believe my bad luck sometimes as things seemed to be looking up but then this happens. Once the flesh has softened they may use maggot dressing therapy to get rid of the dead flesh or a vacuum pump. Some childish part of me thinks maggot therapy sounds cool.....

So after all of our ordeals, being able to sit in  my wheelchair to get to Tim Chamber's wedding is the height of my aspirations at the moment.

Being stuck in bed is very frustrating and I stopped answering my phone most of the time as I have done nothing and been nowhere, so I have very little going on of any interest to talk about.

Maybe this will force me to update my Blog more often. Take care and hope you are all keeping well.

The Clot Thickens

Hello All,

As always I hope this finds you well wherever you are.

In my last blog I had been moaning about trying to motivate myself to break through the misery caused by steady steroid reduction and the subsequent side effects.

Things got worse, reaching a stage where my face swelled up, my eyes were almost swollen shut and I was shedding skin on a daily basis to add to the itching. It was torture to be honest, with the constant itching being the worst thing as it is unrelenting. My wife won't let me put any pictures of myself on the blog out of the sense of preserving some kind of decency. I admit it wasn't pretty. I even scratched most of my eyebrows and some of my hair off. Basically I looked like a mangy cat that had gone 12 rounds and lost. Badly. Now it seems to come in stages.

Jay, practical as always, bought a hand held vacuum and I suffer the ignominy of being regularly hoovered to get rid of skin. The fun was exacerbated when I noticed my left thigh had swollen up, was really hot and felt hard. All the symptoms of Deep Vein Thrombosis. So off to Accident & Emergency for my regular visit, except this time they took blood and confirmed I had a blood clot and made me stay in the ward for the night, despite my most determined attempts to let me go home.

Oh well, the next day I had a scan that located a clot in my groin. Jay told me it looked like a little man crouching (not medically important according to the doctors) when the image came up on the screen during the Ultrasound. I now have to inject myself once a day with blood thinners for the next six months, and then take some kind of blood thinner for the rest of my life.

Thankfully I have had a blood clot before so we knew what to look out for as they can be fatal. And in the meantime the dermatologists finally agreed that I have some form of psoriasis which would account for the skin problems and what they think is psoriatic arthritis. I was given Chemotherapy tabs to take for the psoriasis but that was stopped after my blood results showed up some problems with my liver function that would only get worse if I took the chemo. So I am back to trying out new creams etc.

Otherwise my mother and sister are over from Australia so it has been great seeing them and catching up. We have had a few entertaining evenings and it is nice for Jay and myself to take our minds off everything once in a while. Because I am struggling a bit at the moment I haven't been out to do anything fun for quite a while but we are looking to get a Wheelchair Accessible car I can wheel into rather than have to transfer into, and hopefully we should have our little noddy car sooner rather later.

I have just come back from Stanmore and the results from the MRI I had last Thursday show no change in my tumour growth so that is good news.

Lots of love to all and keep well and hopefully the clot shall thicken no more...